FHP Final 112007

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Brigham and Womens Hospital
Family History Project
2005 2007
Final Report on Phase 1:

A Hospital Employee-Focused
November 2007
Prepared by:
Michael F. Murray, MD
Project Director
Clinical Chief, Genetics Division
BWH Department of Medicine
Karen J. Holbrook, MS, CGC
Project Coordinator (2005-2006)
Genetic Counselor, Adult Clinical Genetics Program
Monica A. Giovanni, MS
Project Coordinator (2007)
Genetic Counselor, Adult Clinical Genetics Program
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Executive Summary
We live at the dawn of the Era of Genomic Medicine. In these times, it is easy
to focus on technology-driven aspects of medicine and to overlook the vital role
that individuals and families can play in ensuring their own best healthcare. With
the introduction of the U.S. Surgeon Generals Family Health Initiative in late
2004, the former United States Surgeon General, Dr. Richard H. Carmona,
together with Dr. Francis Collins, the Director of the NIHs National Human
Genome Research Institute, helped crystallize a growing consensus among
many healthcare experts who believe in the importance of gathering and
organizing ones own family health history for both current benefit and as
preparation for a new era where this and other genetic information will help to
personalize healthcare.
In mid-2005 discussions were initiated among a group of geneticists at Brigham
and Womens Hospital (BWH) that culminated in the launch of the BWH Family
History Project later that year. The vision for this project was provided by Dr.
Cynthia Morton, a geneticist and Harvard professor who imagined an institutionwide activity that would help to "change the culture" of our large urban academic
medical center. The proposed endeavor would seek to simultaneously engage
all employees in gathering their personal family health history and, in addition, it
would focus healthcare providers on developing further expertise with an
essential tool of human genetics, i.e. the family health history, or pedigree.
Simply stated, the project would support the use of the Surgeon Generals data
collection tool for employees to record their own personal family health history.
For some, this data collection would act as a prelude to involvement in eventual
efforts to engage some of the hundreds of thousands of patients of this
healthcare center in doing the same. With generous financial support from the
Harvard Partners Center for Genetics and Genomics (HPCGG), the National
Human Genome Research Institute's (NHGRI) Education and Community
Involvement Branch (ECIB), and the Brigham and Womens Hospitals
Biomedical Research Institute (BRI), this project was officially launched in
November 2005.
From its inception, this project received enthusiastic support from the institutions
leadership including hospital president, Dr. Gary Gottlieb. This support has
been expressed in a multitude of ways, but perhaps in no clearer way than a
hospital-wide policy to officially allow all employees to use up to twenty minutes
of their time on the clock to collect and organize their personal family health
history independently or with the assistance of the project team.
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Our project team, together with scores of volunteers, worked for a period of
approximately fourteen months on the employee-focused phase of this project.
Specifically, they reached out to the over 12,000 hospital employees who are
spread over more than ten different locations in metropolitan Boston in an array
of efforts which are detailed in this document. The main outcomes of this phase
of the project are: [1] the participation of approximately one-third of the hospital
employees in gathering and organizing their personal family health histories, [2]
the gathering of feedback which has helped to strengthen the Surgeon Generals
data collection tool, My Family Health Portrait, [3] a contribution to an evolving
understanding of how to best gather and organize these databases within
healthcare delivery systems, and [4] the establishment of a broad-based clinical
research program aimed at developing model systems for integrating family
health history, genomics, and healthcare delivery.
We are continuing to carry out new work in this area now aimed at promoting the
use of family health history within the patient care arena as well as within
communities. With the completion of the employee focus in early 2007 we
believe that we have set in motion the necessary elements needed to fulfill Dr.
Mortons vision of actually changing the culture of the institution.
This report is meant to illustrate many of the educational tools, outreach
instruments, and data collection efforts developed during this phase of the
project. Our hope is that this model employee-based program will inspire others
to build on this work within both healthcare and other institutional settings. Our
hospital webpage (www.brighamandwomens.org/familyhistory) gives a more
comprehensive description of our teams efforts in this area of genomic medicine
in addition to acting as a clearinghouse for resources on the medical importance
of family health history. In addition, we are happy to field any questions that you
may have regarding this work; please email us at
familyhistoryproject@partners.org or contact us at: BWH Family History
Project, c/o Division of Genetics, Harvard New Research Building Room 455, 77
Avenue Louis Pasteur, Boston, MA 02115.
Thank you for your interest in this work.
Michael F. Murray, MD
Project Director
BWH Family History Project
Table of Contents
I.
PROJECT OVERVIEW
A. Description of Project
B. Employee-Focused Family History Project Summary - Presented at the
2007 National Meeting of the American College of Medical Genetics
C. Funding Summary
D. Project Staff and Project Advisory Teams
II.
APPENDICES
A. Outreach, Education and Family History Tools
1A. Letter to the Hospital Community from Dr. Gary Gottlieb,
Brigham and Womens Hospital President
2A. Family History Project Questions and Answers
3A. BWH FHP Interactive Center
4A. BWH FHP Outreach Materials
5A. BWH FHP Media Coverage
6A. Multi-lingual translations of My Family Health Portrait
6A1. English
6A2. Spanish
6A3. French
6A4. Portuguese
6A5. Polish
6A6. Chinese
7A. Press Release for the Chinese Language Translation of My
Family Health Portrait
8A. Worldwide Media Coverage of BWH Family History Project
9A. Family History Websites
9A1. United States Surgeon Generals Family History
Website
9A2. BWH Public Website
9A3. BWH Intranet Site Pike Notes
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9A4. BWH Gene Talk
10A. Family History and Hard to Reach Populations
B. Hospital and Project Sponsored Events
1B. FHP Kick-Off Events calendar
2B. 2006 monthly project focus
3B. Springtime Family Photo Gallery Event
3B1. Photo Submission Form
3B2. Photos of Employees with their Families
4B. Take Our Children to Work Day Event
4B1. Informational PowerPoint presentation.
4B2. RADM Kenneth Moritsugu, MD, MPH visit to
BWH
4B3. Transcript from National Public Radio (WBUR)
interviews with BWH employees during
Springtime Photo Gallery
5B. BWH 2006 Street Beat Event
6B. BWH FHPs Ice Cream Social Event
7B. BWH FHP Project Participation T-shirts
8B. Family History Day Ceremony 2007
C. Data Collection Tools and Data
1C. Institutional Review Board Application and Notification of
Exemption
2C. Spring (Preliminary) Participation survey March 2006
2C1. Survey Instrument
2C2. Telephone follow-up interview of participants
3C. Fall (Final) Participation November 2006
3C1. Survey Instrument
4C. Website Visits and Page Views
4C1. Listing of Hits to My Family Health Portrait from
Partners computers
4C2. Listing of Hits to Brigham and Womens Hospital
Family History Project Internet Website
5C. BWH Employee and Project Feedback to My Family Health
Portrait site on Usability Issues
6C. Single Question Survey
D. Additional Project Materials
1D. 2005 Proposal to NHGRI-ECIB
2D. Sub-study: Self-referral of Adult Patients for Genetic
Consultation
2D1. Description of Sub-study and Findings
2D2. Presentation by Monica Giovanni at the 2007

National Meeting of the American College of
Medical Genetics
III.
ACKNOWLEDGEMENTS
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I. Project Overview
A. Description of Project Details
Introduction
In November 2005, a press conference was held at Brigham and Womens Hospital
(BWH) in Boston to announce the start of a unique and ambitious project. BWH, a major
teaching affiliate of Harvard Medical School, would be offering an opportunity to all of its
12,000* employees to receive expert support and guidance if they wished to engage in
gathering and organizing their own personal family health history. Interested employees
would be supported in these efforts in three major ways: first, an easy to use web based
or paper based data collection tool would be available to them; second, they could
arrange with their supervisors to spend on-the-job time dedicated to this pursuit; and
third, a full-time staff as well as trained volunteers would be available to answer their
questions regarding both operational and content issues.
The data entry tool used in this project was the U.S. Surgeon Generals My Family
Health Portrait which had been launched as a downloadable program in November
2004, and was launched as an interactive web-based program in conjunction with the
initiation of the Brigham and Womens Hospital Family History Project (BWH FHP) in Fall
2005.
This family history project had a two-fold agenda; it would seek to be both a public health
effort and a research project. The public health aspect of the BWH FHP is based on the
notion that knowing your family history has implications for ones health screening and
disease prevention when properly recorded and reviewed with healthcare providers. All
12,000 employees were invited to gather and organize their family data in an effort to
improve the personal health and the health of their families. To that end, they were
invited to spend up to 20 minutes of work time to get started on this task. Given that
family history could impact not only the employees but also an estimated five family
members for each participant, the potential reach as a public health effort exceeded the
employee population. Importantly, participating individuals were in complete control of
the data collected and were not asked to share family history data with the project as
part of this effort. Instead, participants were encouraged to share this information with
their families and their personal healthcare providers. The research associated with the
project was survey-driven, centering on employee feedback to gauge project
participation, and to obtain feedback on usability of the tool and outcomes related to its
use.
* Note that the number of hospital employees grew during the project period to an estimated 13,000 at
the completion of the project
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Key Support
x
The National Institute of Healths National Human Genome Research Institute

(NHGRI) was a key supporter of this employee-focused project at many levels
and in many different ways. First, the NHGRIs Education and Community
Involvement Branch (ECIB) released a request for proposals in 2005 for a
demonstration project on the integration of Family History and Genomics
Education Materials and Resources into Communities. The BWH response to
that RFP entitled An Employee Based Family History Project within a Large
Urban Hospital was funded (see Appendix 1D). This contract was a critical
support to the launch of these efforts.
In addition to the ECIB contract, NHGRI gave support throughout this project
period with two visits from Dr. Francis Collins (the Institutes Director) and
multiple teleconferences with Dr. Alan Guttmacher (the Institutes Deputy
Director). Mr. Vence Bonham and Ms. Sarah Harding, as ECIB administrators of
the contract, were engaged throughout the project, and Mr. Larry Thompson and
his team provided sustained availability with technical support during the project.
Brigham and Women's Hospital, which is home to one of the most powerful
Biomedical Research Institutes (BRI) in the world, also supported the
project. The hospitals BRI which has total research expenditures topping $370
million in FY2005 (64% attributed to NIH grants) established a mechanism in
2005 to provide seed money for selected research proposals which were
submitted by any of the eight affinity centers within the BRI. The Genetics
Affinity Center put forth a proposal for the BWH Family History Project, which
was funded to support portions of the Phase 1 (employee-focused) and Phase 2
(patient-focused) work.
The Harvard-Partners Center for Genetics and Genomics (HPCGG) is a unique

center within both Harvard Medical School and the Partners Healthcare System.
The Center is composed of faculty with joint appointments at the Harvard Medical
School and within the Partners Healthcare System and has the task of bringing
genetics to patient care. This center provided salary support for several
members of the project team during the project period (see funding summary).
The BWH Division of Genetics within the Department of Medicine has a

longstanding commitment to genetics research. This academic unit led by
Richard Maas (Division Chief) and Nina Zonnevylle (Administrative Manager)
acts as the home within the hospital for this project and provided office space
and administrative help throughout the project period.
The BWH Hospital executive administrative group was apprised of the plan for
the family history project well before its launch. The BWH FHP enjoyed the full
support of the hospitals executive management group throughout this effort. In

addition to the formal approval of the project, many members of the executive
committees were among the first participants and strongest advocates for this
work.
x
The Surgeon Generals office provided leadership and support for the project
through the help of Drs. Richard Carmona and Kenneth Moritsugu. Dr. Carmona
who launched the Surgeon General Offices family history efforts was supportive
throughout the project period. Dr. Kenneth Moritsugu visited the hospital in
Spring 2006 to participate in project activities and meet with the children of
hospital employees to discuss family health history.
Outreach and Communication

The planning team identified two key concepts to communicate to employees right from
the start: privacy and autonomy. Participants in this project were being asked to gather
and organize their personal family health histories for their own benefit and for the
benefit of their families. As such, the goals of the project included protecting the privacy
of this information. The Surgeon Generals web tool has many built in measures to
protect this data including the https associated URL and government servers, which do
not save the data. In addition this project did not save or analyze the family histories
from participants in the project. Participants were free to keep their data private or to
share it with family and primary care providers. While there were best use suggestions,
participants were free to decide what happened to the recorded data.
In an effort to achieve another project goal, the planning team attempted to utilize as
many different modes of outreach as possible, and to work consciously to include those
who might be overlooked if the efforts were exclusively computer based. Specifically,
direct outreach efforts were made throughout the year so as to engage those employees
without computers as a routine part of their job, and those employees who may speak
languages other than English as a primary language. These efforts included the
distribution of outreach materials throughout the hospital, information booths erected in
the hospital cafeteria as well as at offsite locations, data entry sessions in conjunction
with the Occupational Health TB screening program, and direct outreach events with
environmental, mailroom, and food service workers, among others (see Appendix 4A).
FHP staff also worked with Interpreter Services and an outside translation company to
translate the My Family Health Portrait paper tool into Portuguese, French, Chinese,
and Polish for use by those non-native English-speaking groups with significant numbers
of employees at BWH interested in participation (see Appendix 6A, 7A).
We received valuable input from employees throughout the project, including multiple
hospital employees who told us that due to adoption, they were unable to participate. In
an effort to address these comments, FHP staff created a resource for these individuals
accessible through the BWH FHP intranet site (see Appendix 10A). Kris DeGraw
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Danna, BWH Director of Volunteer Services, also shared her personal experience as an
adopted woman who now has children of her own.
Throughout the project period, specific outreach methods were developed and utilized to
reach our diverse employee population. For instance, members of the team who were
healthcare providers were used to address other healthcare providers in relevant
settings, while our outreach specialists developed relationships key members of the nonhealthcare workers.
Multiple venues for computer access were established for those employees without
regular computer access or those who wished to have assistance with data entry,
including the hospital library, computer learning lab, and our projects Interactive Center
(see Appendix 3A). This Interactive Center was established within a high foot-traffic
area of the hospital and was equipped with multiple stations with internet access.
A dedicated BWH FHP telephone number with a confidential voicemail box was attained
through the hospitals Communications Department. The Director of Interpreter Services
at BWH assisted the team in identifying those non-native English-speaking employee
groups at BWH. In addition to direct outreach, this input resulted in the establishment of
Spanish and French Creole confidential voicemail boxes. The hospital interpreter
services team was available throughout the project to translate messages received in
either Spanish or French Creole, and to help facilitate appropriate follow up. The BWH
FHP established a project specific email account (familyhistoryproject@partners.org), as
well as hospital intranet and internet pages (see Appendix 9A).
Additional key collaborations in our outreach efforts included working with human
resources, public affairs, and the leadership of environmental, transport, and food
services. Human resources assisted in outreach to the more than ten non-hospital
locations where employees worked as well as providing the opportunity to speak to all
newly hired employees during new employee orientation (see Appendix 4A11). Public
affairs directed media coverage from outside sources as well as helping to coordinate
internal communications (see Appendix 5A, 8A). Given the high percentage of
employees in environmental, transport, and food services without routine computer
access, the leadership of these groups was particularly helpful in promoting the project
by allowing direct outreach to these employee groups.
Major Project Events
The first institution-wide introduction of the BWH FHP came in an open letter from
hospital president Dr. Gary Gottlieb to the hospital community (see Appendix 1A). One
week prior to the launch of the project, a town hall meeting open to all hospital
employees on November 7, 2005 was held. At this meeting the BWH FHP was
introduced to the employees by Drs. Gary Gottlieb, Cynthia Morton, and Michael Murray.
There was a question and answer period following a brief presentation. Coinciding with
this meeting were all-user email blasts and hospital newsletter descriptions of the project
plan. These emails included frequently asked questions about the planned project
(see Appendix 2A).
A week later the BWH FHP was officially launched on November 15, 2005 during a
national press conference held at BWH [the webcast of that media event is available at
http://www.hhs.gov/familyhistory/ ]. During his keynote address, Dr. Francis Collins,
director of the National Human Genome Research Institute (NHGRI), demonstrated
version 2.0 of the Surgeon Generals My Family Health Portrait to attendees. Dr. Rick
Mitchell, a pathologist at BWH, talked about his personal diagnosis of colorectal cancer
and the benefits of knowing family history details such as that for close family members
such as children. Just two weeks later, Dr. Collins returned to BWH on December 1,
2005 to join a panel to answer questions from BWH employees regarding the use of My
Family Health Portrait.
Following the launch activities the project team worked throughout the year on major
project events (see Appendix 1B, 2B), which highlighted the BWH FHP and its goals.
Some of those events are highlighted in appendices B1 through B8.
Data Collection
The data from the hospital employees was collected in five ways: direct feedback to
project staff in conversation, open employee forums and email exchanges, a preliminary
employee survey in late March 2006 (approximately 5 months after the initiation of the
project), a final employee survey in Fall 2007 in the closing weeks of the project, and a
single question participation ballot which was both emailed and directly distributed at the
time of the projects completion. The participation surveys provided an opportunity for all
employees to provide anonymous feedback on the usability of My Family Health
Portrait (see Appendix 2C, 3C, 6C). Specifically, the surveys were structured to obtain
information on participation, participant motivation, usability of the tool, experience
related to participation, whether the compiled family health history was shared with
family members or healthcare providers and the outcome of those interactions. As with
any survey driven data collection, there are potential biases in survey responses,
however survey and ballot participation numbers were sizable and provide valuable
insight into the use of this kind of data collection tool.
The projects Senior Programmer worked with NHGRIs Information Technology staff to
ascertain the number of visits to different project websites. Retrospective analysis
showed increased visits to all FHP-associated sites during the project year (see
Appendix 4C). This reflected only a portion of total employee visits as many organized
their family health history on home computers. The programming teams from HHS and
BWH worked together to resolve recognized usability issues identified by employee
participants (see Appendix 5C).
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Conclusions
The US Surgeon Generals web based My Family Health Portrait is a useful tool for
gathering and recording family health history. The version that was available during this
project period (November 2005 to December 2006) was associated with an estimated
35% participation in its use among a group of over 12,000 hospital employees in Boston.
Continuous improvement of this program during the project period and in the months
since the completion of this project make it likely that its usability is continuing to
improve.
This document is focused on illustrating the nature and scope of the project together with
the tools used in the outreach. Two upcoming peer reviewed and published manuscripts
will detail more of the data results and analysis. However, we highlight here in this
overview two of the more interesting findings in that data. First, an estimated 4,500
(35%) of our hospital employees reported gathering or organizing family health history
during this project year. This participation occurred in the presence of a year-long
campaign to educate and support the use of the tool but without any specific reward for
participation in the project.
Second, we had the somewhat unique opportunity to be able to capture survey data
from employees about non-participation in the activity of gathering and organizing
family health history. Among those who responded via anonymous survey, we found
only 11% actively decided not to participate in this activity; instead the overwhelming
majority admitted that they simply did not know enough about the activity or had not yet
made the time for this task within their busy schedules.
Some barriers to participation were removed through the design of the project,
specifically access to support services and necessary data entry tools. Most nonparticipants suggested they would have participated if they had made time. Future
projects of this nature should seek specific methods for motivating participants in this
category, such as having primary care providers directly communicate the importance of
this activity.
Based on the experience in this project, as well as other family health history work, our
team believes that a truly simple tool, i.e. the family health history, which has been long
used by health care providers, has the potential to develop into a robust tool for health
care decision making in the 21st century. In order to fulfill this more vigorous role, the
family health history will need to be combined with new computer based information
technology as well as new information from human genetic research.
We propose that model systems be developed and validated which focus on these four
achievable steps toward a 21st century model of family health history implementation.
[1] The work of entering the primary data, which takes at least 20 minutes of time, needs
to be shifted away from health care providers and to patients and their families, who can
use programs like My Family Health Portrait to save data in a structured and editable
format. [2] The work of editing and refining data needs to be a collaborative process
and, when possible, the participants in this process should include multiple family
members as well as their health care providers. [3] Healthcare providers who are
guiding patients based on family history information need to have computer based
decision support in place to provide rapid interpretations of family history data based on
the most up to date genetic and genomic information. [4] A universal goal of
comprehensive structured family history datasets for all patients should be established.
These datasets should exist within provider electronic medical records and patient
controlled personal health records. There should be a clear standard that defines a
comprehensive dataset as one that includes at a minimum all available first and
second-degree relatives.
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B. Employee Based Project Summary Presentation

This PowerPoint presentation was given by Dr. Michael Murray in Nashville, TN on
March 26, 2007 at the invitation of the American College of Medical Genetics Program
Committee as part of the Colleges Annual Meeting.
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Also Known As
A Hospital EmployeeEmployee-Focused
KJ Holbrook, CC Morton, MA Giovanni, MF Murray
Brigham and Women
Womens Hospital, Boston, MA
www.brighamandwomens.org/familyhistory
American College Medical Genetics

Nashville, TN
March 2007
November 2005 - November 2006

Encouraged and supported the use of the US Surgeon Generals
Family History Tool amongst the 13,000 employees of our large
academic medical center.
Goals included:
Identify the obstacles to participation
Understand what participants do with the information
Understand what providers do with the information
Invaluable support from Senior Hospital Management including
allowing all employees 20 minutes of time from their work to work
on family history job time

20052005-2006
Why Hospital Employees?

Change the culture of the Hospital
Train the trainer in family history [for future efforts]
Build a model for other hospitals and health care institutions
[Note: Employees of hospitals comprise over 3.5% of the U.S.
workforce and more than 1% of the total U.S. population]
DESCRIPTION OF THE PROJECT

Outreach
including intranet and internet
Participating employees completely control their own information.

information.
BWH employees who wish, can deliver information to providers.
Project was not designed to collect or analyze employee family health

health
histories.
Education
including talks to employee groups
Data Entry
including an family history station
station
Sponsored Events
Project data was survey derived
DESCRIPTION OF THE PROJECT

The Team
0.35 FTE outreach specialist
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FKLOGUHQDOVRNQRZWKH\QHHGWREHVFUHHQHGDWDQHDUO\DJH,GRQ WZDQW
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0.35 FTE computer programmer

1.0 FTE coordinator
0.5 FTE genetic counselor
dozens of volunteers
Estimating Employee Participation

(November 20052005-2006)
Distribution of Single Question Survey

Survey
[1] all user
user email
[2] paper distribution to employees without email accounts
Have you spent time in the last year gathering and/or

organizing any aspect of your Family Health History?
Single Question Survey

Survey Results
All User
User email sent on 11/8/6 to 12,767 employees
1343 responded [10.5%]
Response
Employees
Percent of
Responses
Yes
482
36
No
818
61
Check Back
43
Two Major Multi-question Employee Survey Periods
N = 395 surveys received in first period

N = 187 (47%)
N = 208 (53%)
(March 2006)
Two Major Multi-question Employee Survey Periods
N = 395 surveys received in first period
Completed Family History

Had not competed Family History
N = 187 (47%)
N = 208 (53%)
(March 2006)

N = 965 surveys received in second period (November 2006)

N = 182 (19%)
N = 783 (81%)

Motivation for completing the Surgeon

Generals My Family Health Portrait
34%
25%
[check all that apply]
28%
61%
18%
47%
18%
Final Survey Period
18%
14%
I thought it would be interesting

I thought it would be fun
I thought it could be beneficial to my health
I did it for the sake of a family member
3%
a parent
6%
a brother or a sister
12%
a child
4%
other
I was encouraged by my co-workers or supervisors
Other
Reasons for not completing FHP
We got people talking
Did you learn anything new about the health of your relatives in the
process of completing your family health history?
33%
Yes
Did you share anything about your health with a relative in the process of
completing/collecting your family health history?
29%
Yes
Would you encourage others to participate in the BWH Family History
Project?
94%
Yes
We got people talking
21%
Discussed with their Health Care Professional

What happened in that encounter?
61%
25%
18%
33%
Estimated PCPs interest as very high

Received recommendation of specific lifestyle changes
Referral to a consultant (most to cardiology or GI)
Nothing, we didnt even discuss it
Conclusions
Based on survey data we estimate that during our BWH

Family History Project:
4,500 employees worked on Family Health History
18% participated based on coworkers recommendation.
21% of survey respondents took family history to PCP
Only 11% of people who had not participated had an
active reason for not participating.
What will it take move comprehensive Family

History Information into EMR
Gathering and organizing of family history data should be

done by the patient, not the provider.
There must be (electronic) tools and decision support for
both patients and providers.
Healthcare providers will need to be specifically motivated
to participate.
Initially, campaigns should be designed around a specific
disease for which there are opportunities for intervention.
Acknowledgements
Financial Support from:
NHGRI - Education and Community Involvement Branch
[V. Bonham and S. Harding]
BWH Biomedical Research Institute
Harvard-Partners Center for Genetics and Genomics
Special Thanks to:

Anne Coakley, Karen Holbrook, Peter Zumphe and
Philistine Ongondo
The 13,000 employees of BWH

resources and further description at:
C. Funding for this Project

We gratefully acknowledge the major funding sources for this project; they are:
NHGRI (National Human Genome Research Institute) The Education and
Community Involvement Branch (ECIB) of the NHGRI develops education and
community involvement programs to engage a broad range of the public in
understanding genomics and accompanying ethical, legal, and social issues. In July
2005 ECIB issued a request for proposals for a Demonstration Project on the
Integration of Family History and Genomics Education Materials and Resources into
Communities. The ECIB chose to fund a proposal that was submitted from BWH
entitled: An Employee-Based Family History Project Within A Large Urban Hospital
(attached as appendix D2).
BRI (BWH-Biomedical Research Institute) The BRI Development Grants offered the
opportunity in September 2005 to apply for seed money to allow for nucleation of the
new BWH-Biomedical Research Institute (BRI) Working Groups. Drs. Maas and Morton,
as co-chairs of the Genetics Working Group, supported an effort to use this funding
opportunity to apply for internal matching funds from the institution. On January 10th
2006 notification of funding was received.
HPCGG (Harvard-Partners Center for Genetics and Genomics) This center has
supported the Family History Project through ongoing salary support for the Principal
Investigator and Project Coordinators as well as through the purchase of computer
hardware for Program outreach.
Additional support came from the BWH Division of Genetics and the Brigham and
Womens Hospital.
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D. Project Staff
SENIOR STAFF:
Michael F. Murray, MD (Project Director 2005-2007) Dr. Murray is the Clinical Chief of the
Genetics Division within the Department of Medicine at Brigham and Womens Hospital and
is on the faculty of Harvard Medical School. He was responsible for directing all aspects of
this Project. His contribution to this project was supported with funding from the HPCGG.
Karen Holbrook, MS, CGC (Project Coordinator 2005-2006) Ms. Holbrook is a Genetic
Counselor in the Adult Medical Genetics Program at Brigham and Womens Hospital. She
coordinated all aspects of this Project and supervised the activities of the volunteers and
staff. Her contribution to this project was supported with funding from the HPCGG.
Monica Giovanni, MS (Project Coordinator 2007) Ms. Giovanni is a Genetic
Counselor in the Adult Medical Genetics Program at Brigham and Womens Hospital.
She helped lead the project sub-study on the use of clinical genetic services, and she
assumed the role of project coordinator following Ms. Holbrooks departure. Her
contribution to this project was supported with funding from the HPCGG.
Phillistine Ongondo (Outreach Coordinator 2006) Ms. Ongondo assisted in all
aspects of the project as a non-clinical member of the team, with a strong emphasis on
introducing the project to and working directly with BWH employees. She was able to
capitalize on her long tenure as a BWH employee to connect with employees throughout
the institution. Her contribution to this project was supported with funding from the BRI.
Peter O. Zumpfe (Project Information Technology Director 2005-2007) Mr. Zumpfe is
a computer programmer with extensive experience in helping create interfaces between
programs for clinicians using family history software. His contribution to this project was
supported with funding from the NHGRI and the BRI.
ADDITIONAL STAFF:
Anne Coakley (Outreach Specialist) Ms. Coakley was a half-time member of the team
who contributed to data organization, data entry assistance, and employee outreach.
Her contribution to this project was supported with funding from the NHGRI.
Sharon Orcutt Peters (Program Administrator) Ms. Peters provided administrative
support and aided in the organization of the final report. Her contribution to this project
was supported with funding BRI funds.
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PROJECT ADVISORY TEAM:
Brigham and Womens Hospital (BWH)

Peter R. Brown (Vice-President Public Affairs & Communication)
Robert C. Goldszer, MD, MBA (Associate Chief Medical Officer)
John Lew (Assistant Director of Human Resources)
Richard L. Maas, MD, PhD (Chief of the Genetics Division)
Cynthia C. Morton, PhD (Director of Cytogenetics)
Dinah Vaprin (Director of Public Affairs)
TECHNICAL SUPPORT:
National Human Genome Research Institute (NHGRI)

Lynn Baumeister
Vence L. Bonham, Jr., JD (Chief, Educational and Community Involvement Branch)
Francis S. Collins, MD, PhD (NHGRI Director)
Alan E. Guttmacher, MD (NHGRI Deputy Director)
Sarah Harding, MPH (Community Outreach Analyst, Educational and Community
Involvement Branch)
Larry Thompson (Chief, Communications and Public Liaison Branch)
Note that these advisors contributed to the effort in an ongoing manner during this
employee-focused project. We are also grateful to the many other project advisors who
contributed expertise and feedback in an ad hoc manner.
II. Appendices
A. Education and Outreach
Appendix 1A. Letter to the Hospital Community
from Dr. Gary Gottlieb, Brigham and Womens
Hospital President
Brigham and Womens Hospitals Executive Management Group provided the FHP
with their full support, including a letter of support to the hospital community from
Hospital President Gary Gottlieb. Dr. Gottliebs letter was emailed to all BWH staff
and was also posted on the FHPs intranet site.
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1A. Letter to the Hospital Community from Gary Gottlieb
Office of the President

75 Francis Street
Boston, MA 02115
Gary L. Gottlieb, M.D., M.B.A.

President,
November 1st 2005
Dear BWH Community,

Brigham and Womens Hospital is known around the world as an innovative medical community with a passion that
surrounds its missions focus on caring, teaching and research. BWHs treasured history embraces an enthusiastic spirit of
discovery, and, once again, our hospital has the opportunity to build on that formidable foundation. We have been given the
unique opportunity to be in the national spotlight and take another step forward in the advancement of medicine.
In this spirit, I would like to introduce and encourage you to learn more about Brigham and Womens Hospital Family
History Project. This project represents an exciting opportunity for all BWH employees to help shape the future of health
care and, at the same time, promote your own health and that of your family. This will be a chance for you to work closely
and collaboratively with your personal care provider and to better understand your own medical history.
The BWH Family History Project will give you the tools to organize your health information into a family tree, using the
U.S. Surgeon Generals My Family Health Portrait. You can find the form to fill out at http://familyhistory.hhs.gov
The information you gather about your family medical history is your personal information that you may wish to share with
medical professionals. The Surgeon Generals hope is that you will do this to empower your physician to provide you the
best in health care. The family medical history you share with your doctor will remain private and will not be provided to
anyone else unless you choose to do so.
The BWH Family History Project begins this month. This is a voluntary effort. You do not have to participate if you
do not wish, but I hope you will because this is a free opportunity to promote your own health and the health of your
family.
If you have questions about the project please visit our Intranet site to view Frequently Asked Questions and an email for
you to ask other questions that might not be addressed.
Here are just a couple of examples.
Why is BWH participating in this project?
A: A family history can enrich the information about your health background, and working with your own doctor, you can
make decisions together about screenings or other prevention efforts for specific conditions that run in your family. This is
valuable information for all of our employees to know. This is the first time that an employer has participated in such a
project of national scope, and the BWH community, with its history of participating in internationally respected research
studies, such as the Nurses Health Study and the Womens Health Project, understands the leadership role it can play by
engaging in this project.
What happens to the family medical history information I collect when I use the U.S. Surgeon Generals My Family
Health Portrait tool?
A: The family medical history information is your private health history. You do not need to share it with anyone unless you
so choose. We encourage you to share it with your personal physician to assist your physician in providing you the best
healthcare possible.
Please join me at a Brigham and Womens hospital-wide meeting on Monday, Nov. 7, at 2 p.m. in the Bornstein
Amphitheater to offer more information and answer your questions about the BWH Family History Project.
Thank you.
Sincerely,
Gary Gottlieb, MD, MBA
BWH President
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Appendix 2A. Family History Project Questions

and Answers
With the launch of the BWH Family History Project, FHP staff and advisory board
members created a document to answer frequently asked questions about the
project. This document was emailed to all Brigham and Womens Hospital
employees along with Dr. Gottliebs Letter to the Hospital Community supporting
the project and was also posted on the Family History Projects intranet site. In
addition, copies of this document were always available during employee outreach
and data entry sessions in the FHP Interactive Center.
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Brigham and Women's Frequently Asked Questions
1.) What is Brigham and Women's Family History Project?

A:
The BWH Family History Project, organized by the newly formed BWH Biomedical Research
Institute's Center for Integrative Genetic Medicine, will give employees the tools to voluntarily
collect and organize, for their own private purposes, a family health history, with a level of detail
that is usually not included in the medical record. The integration of family medical history into
your medical care can assist your health care provider in making informed decisions about
screening tests and preventive measures that could save your life. The BWH Family History Project
will evaluate the obstacles to gathering family medical histories and will seek an understanding of
what patients and providers do with the family medical history information, evaluating how it can
best assist in patient care. Furthermore, this project will help to build the educational and
information technology infrastructure needed to improve this area of health care.
2.) Why is BWH participating in this project?
A:
There is growing evidence that a detailed and accurate family medical history can improve the
chances that you (and your health care provider) will better understand your potential health risks
and the opportunities to plan for a healthy life. Many professional medical groups, such as the
American Medical Association, recognize the importance of a complete family medical history and
are now calling for improvements in the way that patients and their health care providers collect
and organize their information. In August 2005, the National Institutes of Health (NIH), through
its National Human Genome Research Institute's (NHGRI) Education and Community Involvement
Branch, selected Brigham and Women's Hospital to create a model program and to develop the
necessary supportive materials to educate and engage a health care community in the use of
family history in health care. This is the first time that an employer has participated in such a
project of national scope, and the BWH community, with its history of participating in
internationally-respected research studies, such as the Nurses' Health Study and the Women's
Health Initiative, understands the leadership role it can play by engaging in this project.
3.) Why should I participate in this project?
A:
You should participate in the BWH Family History Project because it has the potential to
improve the health care that you and your family may need. It is hoped that you will view this
opportunity to complete a family medical history, either with your family in your own home, or in a
supportive setting in which there are project staff available to assist you as needed in the taking of
your health history. Participation in the BWH Family History Project is yet another example of a
benefit of being a BWH employee. The U.S. Surgeon General, Dr. Richard H. Carmona, said it
best, "Knowing your family's history can save your life."
4.) What happens to the family medical history information I collect when I use the U.S.
Surgeon General's "My Family Health Portrait" tool?
A:
The family medical history information is your private health history. You do not need to
share it with anyone unless you so choose. We encourage you to share it with your personal
physician to assist him or her in providing you the best health care possible.
5.) How do I participate? Where do I find the information?

A:
Visit http://familyhistory.hhs.gov. The site will soon include a printable version and a Spanish
version. Watch for updates on This Week @ BWH.

6.) What if I have questions? Whom should I ask?
A:
Starting in November, there will be a number of ways to answer all of your questions.
Information sites will be located throughout the hospital where project staff can answer your
questions. Questions can also be answered by e-mailing familyhistoryproject@partners.org or
calling 617-525-4777. This number is a voice mail only line with voice mailboxes in English,
Spanish and French Creole. Staff can also provide expert advice and guidance to those who are
interested in discussing their history with a genetic counselor or medical geneticist.
7.) What about the privacy of my health information and that of my family members?
A:
Goals of the BWH Family History Project do not include the gathering of the family health
history of participants. The information that you gather about your family's health history is your
private information and you will control the information. A goal of this project will be to survey
employees and staff and review responses about the following information: why people choose to
participate or not participate, and what participants did with the information they generated (e.g.,
was it shared with a health care provider, and did it make a difference in an individual's health
care). We hope that you will fill out the surveys so that we can learn how to improve this process.
8.) If I share family history information with my physician, will it be protected?
A:
You should be aware that the inclusion of family history information in individual patient's
medical records is not something new, and family history information has the same safeguards in
place to protect it, as do all of your medical records. Groups representing medical professionals,
such as the American Medical Association and consumer advocacy groups like the Genetic Alliance,
are amongst those who believe that placing more complete family history data into the hands of
your health care providers will result in a net benefit for individuals who choose to take these
steps.
9.) What if I choose not to participate?
A:
You are free to choose not to participate. The staff of the BWH Family History Project,
however, will be available to assist anyone who wishes to participate during the course of the next
12 months, so that if you initially decline but later change your mind, based on the positive
experience of friends or co-workers, you may participate at a later date.
10.) I understand that over the next several months, there will be individuals who are
assisting in this project who will ask me to participate in a survey. How will I know that
these people are connected to the project?
A:
Our BWH Intranet site will soon have a list of all our project staff, and they all will have BWH
identification badges when you meet them.

11.) How long does it take to fill out the Surgeon General's Family History Tool?
A:
It should take about 10-20 minutes for the initial completion of the tool. However, recording
your family medical history as completely and accurately as possible will usually entail doing a little

extra homework, such as talking to your relatives about their medical problems or the medical
problems of family members who are deceased. After initial completion of the Family History Tool,
you can update it wherever you filled in "I don't know" or where an error may have been made.
12.) Will BWH give me time from my responsibilities to fill out the necessary form?
A:
Yes, your supervisors will be encouraged to provide you with 10-20 minutes to complete this
document. You must arrange for this time in advance at a mutually convenient time.
13.) What if I do not have access to a computer? Can I still participate in the BWH
Family History Project with the U.S. Surgeon General's "My Family Health Portrait" tool?
A:
BWH is committed to offering online access to BWH employees who need a computer to fill out
the Family Health Portrait. For individuals who are unfamiliar with using a computer, project staff
will be available for assistance. The sites and times for computer availability will be posted around
the hospital. Soon, the U.S. Surgeon General's office will provide printable version of the tool,
which can be completed and mailed back to the project office.
14.) Who is funding this project?
A:
The National Institutes of Health has awarded Brigham and Women's Hospital the only grant
in the country available for this type of family history demonstration project, and the BWH Center
for Integrative Genetic Medicine under the auspices of the BWH Biomedical Research Institute also
supports this project. Both groups believe this project will provide groundbreaking information
that will improve your medical care.
15.) How long will this project last?
A:
The BWH Family History Project begins in November 2005 and will be completed by November
2006. November was chosen because Thanksgiving Day has been designated as "National Family
History Day" in the United States as many individuals will have the opportunity on that day to
discuss and better understand their family's health history. Brigham and Women's Family History
Project will cover two Thanksgiving holidays, but family history information can be collected
throughout the project period and beyond. Gathering your family history can be a one-time
exercise or a lifelong family project.
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Appendix 3A. Photograph of BWH FHPs

Interactive Center
Project team members procured space within a high foot-traffic area in the hospital
for the opening of our Interactive Center. This Interactive Center provided an area
for FHP staff to assist employees in the creation of their family health portrait.
Internet connection within the Interactive Center was made available to the FHP, and
laptop computers with privacy screens were utilized during individual data entry
sessions. FHP customized CD-Rs were distributed to each employee who visited the
Interactive Center; these CD-Rs allowed participants to record and store ones
personal family health history. Employees were reassured in this way that their
personal family health history information was not stored on the FHP laptop
computers. The weekly hours of operation for the Interactive Center were posted on
the FHP intranet site and on a large signpost in front of the Interactive Center.
Staffing of the Interactive Center included FHP staff and volunteers.
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3A. Photograph of BWH FHP's "Interactive Center"
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Appendix 4A. BWH FHP Outreach Materials

FHP staff, in conjunction with graphic designers, developed outreach materials for
the promotion of the project throughout the hospital. These materials included:
[1] Family History Project Informational Brochure Distributed to employees (two
pages)
[2] Family History Project Poster #1 Displayed at various locations throughout the
hospital and satellites
[3] Family History Project Poster #2 Displayed at various locations throughout the
hospital and satellites
[4] Family History Project Deposit Survey Poster Displayed at survey drop-off sites
[5] Materials Used in Promoting Project:
a. Top Center Tabletop project information signs
b. Center CD-R used to save family history
c. Bottom Left and Right Buttons distributed to employees
[6] Project Staff Member with Informational Stand Set up prior to events to
advertise project.
[7] Family History Project Balloon Used at media and various project events
[8] Family History Project Banner Used at media and various project events
[9] Laptop Computer One of three laptop computers purchased for the project.
Used by employees to go online to the My Family Health Portrait site.
[10] National Coalition for Health Professional Education in Genetics Poster
Displayed at National Coalition for Health Professional Education in Genetics
(NCHPEG) Conference, February 2 -3, 2006
[11] PowerPoint Presentation to New Employees Given weekly to the 25-50 new
hospital employees at a required orientation program.
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4A1. Family History Project Informational Brochure
4A1. Family History Project Informational Brochure
4A2. Family History Project Poster #1
4A3. Family History Project Poster #2
4A4. Family History Project Deposit Survey Poster
4A5. Materials Used in Promoting Project
4A6. Project Staff Member with Informational Stand
4A7. Family History Project Balloon
4A8. Family History Project Banner
4A9. Laptop Computer
4A11. PowerPoint Presentation to New Employees
BWH Family History Project Plan
The Brigham and Women

Womens Hospital
Provide tools for all BWH employees to complete family health history
(https://familyhistory.hhs.gov)
Participating employees completely control their own information.
Karen Holbrook, MS, CGC and

Mike Murray, MD
Genetics Division, Department of Medicine
Brigham and Women
Womens Hospital
Doesn
Doesnt my doctor already have my
Family Health History
History?
Those BWH employees who wish can deliver their family health
history information information to their providers. Patients and
doctors agree that family health history is important information
information for
keeping people healthy.
Doesn
Doesnt my doctor already have my
Family Health History
History?
Average office visit for family practitioner = 16 minutes
Average office visit for family practitioner = 16 minutes
Average time to take a detailed and complete family

history = 1515-20 minutes
Average time to take a detailed and complete family

history = 1515-20 minutes
Participating in this Project allows you and your doctor to

spend more time focused on what to do about the family
health history and less time gathering and organizing the
history.
Participating in this Project allows you and your doctor to

spend more time focused on what to do about the family
health history and less time gathering and organizing the
history.
The Surgeon Generals Tool
4A11. PowerPoint Presentation to New Employees

HOW DO I PARTICIPATE?
WHERE DO I FIND THE INFORMATION?
More information can be found at
http://www.bwhpikenotes.org/FamilyHistoryProject/Introduction.asp).
WHAT IF I HAVE QUESTIONS? WHOM SHOULD I ASK?

Information sites at various locations in the hospital with
Project staff who can answer your questions.
Questions can be directed to Project staff by phone (617525-4777) or email (familyhistoryproject@partners.org).
When requested, the Project staff will provide expert advice
and guidance to those who are interested in having
questions answered by a genetic counselor or medical
geneticist.
WHAT IF I DO NOT HAVE ACCESS TO A COMPUTER?

CAN I STILL PARTICIPATE?
BWH is committed to offering online access to BWH
employees who need a computer to fill out the Family
Health Portrait. For individuals who are unfamiliar with
using a computer, Project staff will be available for
assistance. The sites and times for computer availability
will be posted around the hospital.

HOW LONG DOES IT TAKE TO FILL OUT THE SURGEON
GENERALS FAMILY HISTORY TOOL?
It should take about 10-20 minutes for the initial completion
of the tool.
WILL BWH GIVE ME TIME FROM MY RESPONSIBILITIES TO
FILL OUT THE NECESSARY FORM?
Yes, your supervisors will be encouraged to provide you
with 10-20 minutes to complete this document. You must
arrange for this time in advance at a mutually convenient
time.
Participation Surveys
What we hope to learn:
How to make it more user friendly

How to make it more useful for patients
How to make it more useful for healthcare providers
Appendix 5A. BWH FHP Media Coverage

BWHs Public Affairs department was instrumental in spreading the word about the
launch of the BWH FHP, with summaries of the project appearing in their weekly
electronic email to all BWH staff and in the weekly hospital newsletter, BWH Bulletin.
The Public Affairs department also facilitated an interview for Michael Murray, MD
with Bostons local Fox news network November 23, 2005. The project generated
significant media coverage in the Boston area and on a national level.
BWH Family History Project National News Stories
[1] From HHS/NHGRI following November 15, 2005 Press Conference:
http://www.genome.gov/17515539
[2] From NIH News following November 15, 2005 Press Conference:
http://www.nih.gov/news/pr/nov2005/nhgri-15.htm
[3] From AMN Healthcare, week of December 5, 2005:
http://www.amnhealthcare.com/Features.asp?ArticleID=14602
[4] From WPIX-TV (WB11.com) New York:
http://wb11.empowereddoctor.com/story.php?id=686
[5] From Kansas City InfoZine November 30, 2005:
http://www.infozine.com/news/stories/op/storiesView/sid/11660/
BWH Family History Project Local News Stories

[1] From the Harvard University Gazette newspaper February 2, 2006:
http://www.news.harvard.edu/gazette/2006/02.02/09-family.html
[2] From Massachusetts Hospitals: Continuing Commitment to Patient Safety and
High Quality Care February 1, 2006:
http://www.patientsfirstma.org/advance/06-02-01.cfm#11
[3] From BWH Public Affairs November 15, 2005:
http://www.brighamandwomens.org/publicaffairs/Newsreleases/U.S.%20Surgeon%2
0General%20Urges%20Americans.asp
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BWH Family History Project Internet News Stories
[1] From Healthcare IT News November 15, 2005:
http://www.healthcareitnews.com/story.cms?id=3989
[2] From dLife (Diabetes News) November 15, 2005:
http://www.dlife.com/dLife/do/ShowContent/diabetes_news/news_archive_november
_2005/diabetes_newsarticle111505_us_surgeon_general_urges_americans_to_kno
w_their_family_health_history.html
[3] From Senior Journal.com November 23, 2005:
http://www.seniorjournal.com/NEWS/Features/5-11-23-FamilyHealthHistory.htm
Other media related items

[1] Boston Herald newspaper: (Wish)boning up on family health: Docs urge
Thanksgiving chat to learn history of illness
By Jessica Heslam Wednesday, November 16, 2005
[2] Fox25 television live interview with Michael Murray, MD and David Wade:
November 22, 2005
[3] WBUR (National Public Radio) interview with Michael Murray, MD and Martha
Bebinger: June 12, 2006
BWH Bulletin (weekly newsletter for and about the people of BWH: see attached
newsletters)
[1] November 11, 2005: Family History Project Kicks Off (page 1)
[2] November 18, 2005: Family History Initiative Launched Nationally at BWH (page
1)
[3] November 25, 2005: Know Your History: Thanksgiving is National Family Health
History Day (page 1)
[4] December 9, 2005: BWH Family History Project in Full Swing (page 2)
[5] January 20, 2006: Mailroom Staff Completes Their Family Medical Histories
(page 4)
5A1. BWH Bulletin November 11,2005
5A2. BWH Bulletin November 18, 2005
5A3. BWH Bulletin November 25, 2005
5A4. BWH Bulletin December 9, 2005
5A5. BWH Bulletin January 20, 2006
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Appendix 6A. Multi-lingual Translations of My

Family Health Portrait
The US Surgeon Generals tool was made available in both English and Spanish. In
an effort to reach a larger population, the Brigham and Womens Hospital Family
History Project worked with the Hospitals Interpreter Services Department and an
outside translation company to translate the My Family Health Portrait paper tool
into Portuguese, French, Chinese, and Polish for use by non-English speaking
employees. These four languages were chosen based upon those non-native
English-speaking groups with significant numbers of employees at BWH. Adobe
software was used to edit the paper tool PDF into the same format as the original
English and Spanish versions made available through the Department of Health and
Human Services (HHS). Paper copies of the foreign language versions of My
Family Health Portrait were available during employee outreach and data entry
sessions in addition to being posted on the Family History Project intra-and internet
sites. Following are the PDF documents of My Family Health Portrait as translated
into:
[1] English
[2] Spanish
[3] French
[4] Portuguese
[5] Polish
[6] Chinese
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[1] English
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[2] Spanish
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[3] French
BRIGHAM & WOMENS HOSPITAL

FAMILY HISTORY PROJECT
PORTRAIT DE
SANTE
DE MA FAMILLE
INITIATIVE DU CHIRURGIEN GNRAL

SUR LHISTOIRE DE LA FAMILLE
Pour Creer Un Portrait de Sante de Famille En Ligne

Visitez:
www.hhs.gov/familyhistory/
[3] FrenchInitiative de lHistoire de la famille du Chirurgien Gnral

Comment Crer le Portrait de Sant de Ma Famille
Le Chirurgien Gnral a lanc une initiative nationale encourageant toutes les

Familles Amricaines apprendre davantage sur lhistoire de sant de leur famille.
Connatre lhistoire mdicale de votre famille peut sauver votre vie.
Avec une copie de lhistoire de sant de votre famille, vous et un professionnel de soins
de sant pouvez individualiser vos soins prvenir et dceler les conditions pour lesquelles
vous seriez prdispos et courriez un plus grand risque. Les vnements tels que
Thanksgiving, les reunions de famille, offrent une bonne occasion pour assembler des
informations pour le Portrait de Sant de Ma Famille.
A Qui Devrais-je parler?

Pour recueillir les informations les plus prcises sur lhistoire
de sant de votre famille, il est important de parler
directement aux membres de votre famille. Expliquez-leur que
linformation au sujet de leur sant peut aider amliorer la
prvention et la dtection de maladies pour tous les membres
de la famille.
Commencez vous informer auprs de vos parents des
diffrentes conditions de sant dont ils souffrent ou quils ont
souffert incluant lhistoire des maladies chroniques, telles
que les maladies cardiaques; des complications lors des
grossesses, tel que avortement spontan; et nimporte quelle
handicap au niveau du developpement. Compilez autant
dinformation spcifique que possible.
Cest encore plus utile si vous pouvez obtenir une liste
formelle des noms des diffrentes conditions mdicales qui
vous ont affectes ainsi que vos parents.
Vous pouvez trouver de laide dans la recherche dinformation
au sujet des conditions qui vous ont affectes ainsi que les
membres de votre famille vivants ou dceds en
questionnant vos parents ou les professionnels des soins de
sant, ou bien en reclamant des copies des dossiers
mdicaux.
Si vous projetez davoir des enfants, vous et votre partenaire
devriez crer chacun un portrait de sant de votre famille et le
montrer votre mdecin traitant.
Connatre lhistoire de sant de sa famille est un guide

puissant pour comprendre les risques qu on court de
dvelopper une maladie. Cependant, il faut garder lesprit que
lhistoire dune maladie particulire dans une famille peut
augmenter le risque de dvelopper cette maladie, mais jamais
ne constitue une garantie que dautres membres de la famille
la dvelopperont.
Le Plus Important
Parents
Frres et Soeurs
Vos enfants
Aussi Important
Grand-parents
Oncles et Tantes
Nieces et neveux
Demi-Frres et Demi-Soeurs
Obtenir des Informations

si vous pouvez
Cousins
Grand-Oncles et Grand-Tantes
Comment Dois-Je Remplir La Forme?
[3] French
La forme portrait de sant de ma famille vous aidera
collecter et organiser les informations concernant votre
famille. Il ny a aucune forme qui puisse reflter toutes les
versions de la famille amricaine, alors, utilisez cette
forme comme un point de dpart et adaptez-la aux
besoins de votre famille.
Dabord, crivez le nom de chacun de vos parents dans
la bote dsigne cet effet, encerclez selon quil soit
homme (M) ou femme (F). Puis, sur la prochaine ligne
inscrivez la liste de toutes les conditions mdicales quils
ont eues. Si vous connaissez lge auquel le diagnostique
a t fait crivez cela entre parenthse tout de suite
aprs la maladie. Par exemple: diabte (diagnostiqu
lge de 37 ans)
Si les membres de la famille sont dcds, crivez
dcds et lge auquel ils sont morts. Par exemple:
crise cardiaque (dcd lge de 63 ans).
Si ce sont des jumeaux, crivez jumeau sur la premire
ligne pour les deux individus. Si les jumeaux sont
identiques,crivez jumeaux identiques sur la premire
ligne pour les deux individus.
Certaines conditions sont plus courantes chez des

personnes de mme parente et ayant des anctres
communs. Cest trs important de retracer les souches
des anctres de vos parents et tre aussi spcifique que
possible. Par exemple si vous savez que votre grandmre est espagnole et que sa famille vient du Mexique,
crivez mexicaine sous son nom. De mme, si votre
famille vient de lAfrique, de lAsie, de lEurope ou de
lAmrique du Sud notez le pays de leur origine.
Une fois que vous auriez achev le Portrait de sant de
ma famille apportez- le votre mdecin pour quil puisse
mieux individualiser vos soins de sant. Assurez-vous de
garder une copie pour vos archives et faites une mise
jour aussi souvent que les circonstances changent ou si
vous apprenez davantage au sujet de lhistoire de sant
de votre famille.
Flicitations de ce que vous ayez dcid de choisir une
vie plus longue et une meilleure sant. Le Portrait de
sant de ma famille peut tre un moyen efficace
damliorer votre sant aujourdhui et dans le futur.
Si votre famille comprend des demi-soeurs et des

demi-frres, crivez demi-soeurs et demi- frres sur la
premire ligne et noter de Pre diffrent ou de mre
diffrente sur la ligne suivante.
Dcoupez et ajoutez au dossier si ncessaire.
[3] French
[4] Portuguese BRIGHAM
& WOMENS HOSPITAL

FAMILY HISTORY PROJECT
O Retrato de
Sade da minha
Famlia
Iniciativa de Histria Clnica Familiar

do Surgeon General
PARA CRIAR UM RETRATO DE SADE DA FAMLIA NA INTERNET

ENTRE EM:
Iniciativa de Histria Clnica Familiar do Surgeon General para Criar

[4] Portuguese
Retrato de Sade da minha Famlia
O Surgeon General, autoridade mxima de sade pblica nos Estados Unidos, lanou uma iniciativa
nacional para persuadir todas as famlias americanas a procurar saber mais informaes sobre a
histria clnica de todos os membros da famlia.
A sua vida pode ser salva se souber a histria clnica de sua famlia.
Tendo uma cpia da histria clnica de sua famlia, pode ajudar um professional de sade a
personalizar os cuidados/tratamento de que necessita, ou para preveno, e fazer os exames de
rastreio para certas doenas de maior risco para si. Acontecimentos familiares, tais como reunies
familiars ou Dia de Ao de Graas (Thanksgiving) so boas oportunidades para recolher informao
para o Retrato de Sade da minha Famlia.
COM QUEM DEVO FALAR?

Para obter informaes mais corretas possvel,
importante que fale diretamente com os seus familiares.
Explique-lhes que a informao sobre a sade deles
pode ser til para melhorar a preveno e rastreio de
doenas para todos os membros da famlia.
Comee por perguntar aos seus familiares sobre
qualquer doena que tenham tido- inclusive doenas
crnicas, tais como doenas cardacas; complicaes
durante gravidez, tais como aborto espontneo; e
quaisquer problemas durante o crescimento. Obtenha
informao de forma mais especfica possvel.
Ser mais til se poder escrever o nome mdico de
qualquer doena que voc ou a sua famlia tenham tido.
A melhor maneira de obter informao sobre doenas
suas ou de seus familiares- vivos ou mortos-
perguntado os familiares ou profissionais de sade, ou
pedindo cpias de arquivos mdicos.
Se estiver planejando ter filhos, voc e seu
companheiro/a devem criar um retrato de famlia e
mostr-lo ao seu profissional de sade.
Saber a histria clnica de sua famlia um guia poderoso

para a compreenso do risco para doena. Contudo,
lembre-se que a existncia de uma determinada doena na
famlia pode aumentar o risco, mas quase nunca garante
que outros membros da famlia possam vir a ter a doena.
Mais Importantes
Me e Pai
Irmos e Irms
Os seus filhos
Tambm Importantes
Avs e avs
Tios e Tias
Sobrinhas e Sobrinhos
Meios-Irmos e Meias-Irms
Se Puder Obtenha Informao
Primos e primas
Tios-Avs e Tias-Avs
Como Preencho o Formulrio?
[4] Portuguese
O formulrio de Retrato de Sade da minha Famlia
vai ajud-lo a recolher e organizar informaes sobre a
sua famlia. Nenhum formulrio pode representar todas
as verses da famlia americana, assim sendo use este
diagrama como ponto de partida e adapte-o de acordo com
a sua famlia.
Primeiro, escreva o nome de cada um dos seus
familiares nos blocos designados e marque com um
crculo se forem machos (M) ou fmeas (F). Na linha
seguinte, escreva o nome de qualquer problema de
sade que tenham tido. Se souber a idade que tinham
quando foram diagnosticado com a doena, escreva
entre parnteses depois do nome da doena. Por
exemplo: diabetes (diagnosticado(a) - idade 37).
No caso dos familiares que j morreram, escreva
falecido(a) e a idade que tinham quando faleceram.
Por exemplo: ataque cardaco (falecido(a) - idade 63).
Para gmeos, escreva gmeo(a) na primeira linha
para ambas as pessoas. Caso os gmeos sejam
idnticos, escreva gmeo(a) idntico(a) na primeira
linha para ambos(as).
Algumas doenas so mais comuns entre pessoas com

os mesmos antecedentes ou antepassados. importante
que registre os antepassados dos seus familiares e seja
o mais especfico possvel. Por exemplo, se souber que a
sua av hispana e a famlia dela oriunda do Mxico,
escreva Mexicana por baixo do nome dela. Da mesma
maneira, se a sua famlia for oriunda da Africa, Asia,
Europa ou America do Sul, escreva o pas de origem, se
for possvel.
Depois de completar o Retrato de Sade da minha
Famlia, leve-o ao seu professional de sade para que
ele ou ela possa personalizar melhor os seus cuidados/
tratamento de sade. Mantenha os dados do seu arquivo
mdico em dia, fazendo as mudanas conforme for
obtendo mais informaes sobre a histria clnica da sua
famlia, e guarde uma cpia para si.
As nossas felicitaes por ter dado este passo rumo a
uma vida mais longa e mais saudvel! O Retrato de
Sade da minha Famlia pode ser uma maneira eficaz
de melhorar a sua sade hoje e no futuro.
Se na sua famlia existerem meios-irmos ou meiasirms, escreva meio-irmo ou meia-irm na primeira

linha e anote pai diferente ou me diferente na
linha seguinte.
Copie e acrescente conforme for precisando
[4] Portuguese
[5] Polish
Portret
Zdrowia
Mojej
Rodziny
INICJATYWA NACZELNEGO LEKARZA

STANW ZJEDNOCZONYCH W SPRAWIE
HISTORII ZDROWIA RODZINY
Brigham and Women's Hospital Family History Project
[5] Polish
JAK NALEY WYPENI FORMULARZ?
Formularz Portret zdrowia mojej rodziny umoliwia

zebranie i uporzdkowanie informacji o swojej
rodzinie. aden formularz nie jest w stanie obj
kadego wariantu rodziny amerykaskiej, dlatego
wic przedstawiony wykres suy jako punkt wyjcia,
ktry naley dostosowa do potrzeb danej rodziny.
Po pierwsze w wyznaczonych kwadratach naley
wpisa imiona i nazwiska wszystkich czonkw
rodziny i zaznaczy, czy s mczyznami (M) czy
kobietami (K). W nastpnym wierszu naley
wyszczeglni wszystkie choroby, na ktre chorowali.
Jeeli zna Pan(i) wiek, w ktrym zdiagnozowano
dan chorob, prosz poda go w nawiasie po
nazwie choroby, np.: cukrzyca (zdiagnozowana w
wieku 37 lat).
Jeeli czonek rodziny nie yje, naley wpisa zmar
oraz wiek, w ktrym nastpia mier, np.: zawa
(zmar - w wieku 63 lat).
W przypadku blinit naley wpisa w pierwszym
wierszu bliniak przy obu osobach. Jeeli blinita
s jednojajowe, naley w pierwszym wierszu wpisa
blinita jednojajowe.
Jeeli Pana(i) rodzina obejmuje rodzestwo
przyrodnie, naley w pierwszym wierszu wpisa
przyrodni brat lub przyrodnia siostra, a w

nastpnym wierszu odpowiednio inny ojciec lub
inna matka.
Niektre choroby wystpuj czciej u osb z tego
samego rodowiska lub o wsplnym pochodzeniu.
Dlatego tak wane jest, aby poda pochodzenie
swoich krewnych i jak najwicej szczegw.
Przykadowo, jeeli wie Pan(i), e babcia jest
Latynosem, a jej rodzina pochodzi z Meksyku, naley
pod jej nazwiskiem napisa Meksykanka. Podobnie,
jeeli rodzina pochodzi z Afryki, Azji, Europy lub
Ameryki Poudniowej, naley w miar moliwoci
poda kraj pochodzenia.
Po wypenieniu formularza Portret zdrowia mojej
rodziny naley zabra go do swojego lekarza, ktry
odpowiednio zindywidualizuje opiek medyczn.
Radzimy zrobi kserokopi zgromadzonych
materiaw, ktre naley uaktualnia wraz ze zmian
okolicznoci lub poznawaniem nowych danych na
temat historii zdrowia rodziny.
Gratulujemy! Formularz to krok naprzd w kierunku
duszego i zdrowszego ycia! Portret zdrowia mojej
rodziny moe by skutecznym sposobem na
popraw stanu zdrowia zarwno dzisiaj, jak i w
przyszoci.
ODCI I DODA DO WYKRESU

W RAZIE POTRZEBY

M
K
M
K

M
K
M
K

M
K

M
K

[5] Polish
INICJATYWA NACZELNEGO LEKARZA STANW ZJEDNOCZONYCH w
SPRAWIE HISTORII ZDROWIA RODZINY
JAK OPRACOWA PORTRET HISTORII ZDROWIA SWOJEJ RODZINY?

Naczelny Lekarz Stanw Zjednoczonych wprowadzi oglnokrajow inicjatyw
zachcajc wszystkie amerykaskie rodziny do dokadnego poznania swojej
historii zdrowia.
Znajomo medycznej historii swojej rodziny moe ocali ycie.
Przy uyciu egzemplarza historii zdrowia Pana(i) rodziny pracownicy suby
zdrowia mog zindywidualizowa opiek medyczn, wykonujc badania
kontrolne i zapobiegajc chorobom, ktrych wystpienie obarczone jest
wikszym ryzykiem. Spotkania rodzinne, przykadowo podczas wita
Dzikczynienia lub zjazdw rodzinnych, stanowi wietn okazj do zebrania
informacji na potrzeby Portretu zdrowia mojej rodziny.
Z KIM NALEY
POROZMAWIA?
Aby zebra jak najbardziej dokadne dane o
historii medycznej, naley rozmawia
bezporednio z krewnymi. Warto im wyjani, e
informacje o ich zdrowiu mog usprawni
profilaktyk chorb i badania kontrolne dla
wszystkich czonkw rodziny.
Najpierw naley zapyta krewnych o wszystkie
schorzenia, ktre mieli, w tym take choroby
przewleke, jak np. choroby serca, komplikacje
podczas ciy, jak np. poronienia oraz wszelkie
wady rozwojowe. Trzeba zebra jak najbardziej
szczegowe informacje.
Znajomo historii chorb w rodzinie jest

niezwykle przydatnym narzdziem
umoliwiajcym poznanie ryzyka zachorowania
na poszczeglne choroby. Warto jednak
pamita, e historia danej choroby w rodzinie
moe zwikszy ryzyko, ale niemal nigdy nie
gwarantuje, e inni czonkowie rodziny te na
ni zachoruj.

Rodzice
Rodzestwo
Dzieci
Bardzo przydatne byoby wpisywanie formalnych

nazw chorb, przez ktre przeszli czonkowie
rodziny.
Istnieje moliwo uzyskania pomocy przy
zbieraniu danych na temat chorb wrd
czonkw rodziny zarwno yjcych, jak i
nieyjcych. O informacje mona poprosi
krewnych lub pracownikw suby zdrowia;
mona rwnie poprosi o kopie akt pacjenta.
Jeeli planuj Pastwo ci, naley opracowa
portret historii zdrowia obu rodzin i pokaza go
lekarzowi prowadzcemu.
Najwaniejsze osoby

Inne wane osoby

Dziadkowie
Wujkowie i ciotki
Dzieci rodzestwa
Rodzestwo przyrodnie
W miar moliwoci zaleca si

rwnie zebranie informacji od
Kuzynw
Dziadkw stryjecznych i ciotecznych
[5] Polish
PORTRET ZDROWIA MOJEJ RODZINY
Data:
Babcia
M
K
M
K
Imi i nazwisko:
Babcia
Dziadek
Dziadek

M
K
M
K
M
K
Ciotki/wujkowie
Matka
M
K
M
K
Ojciec
M
K
Ciotki/wujkowie

M
K
M
K
M
K
M
K
M
K

Ty
Bracia/siostry
Wspmaonek/partner
M
K
M
K
M
K
M
K
Twoje dzieci

M
K
[5] Polish
Aby przygotowa portret zdrowia rodziny w internecie,

naley wej na stron:
www.brighamandwomens.org/familyhistory/
Listopad 2004
[6] Chinese

Brigham and Women's Hospital Family History Project
[6] Chinese
37
63

[6] Chinese

[6] Chinese

[6] Chinese
www.brighamandwomens.org/familyhistory/
200411
..
..
..
..
..
Appendix 7A. Press Release for the Chinese

Language Translation of My Family Health
Portrait
The release of the Chinese version of the paper tool caught the attention of the
media.
..
..
..
..
..
7A1. Press Release for the Chinese Translation of "My Family Health
History"
For Immediate Release

Monday, September 25, 2006
Contact: Jessica Podlaski

(617) 534-1603
jpodlaski@partners.org
BWH Extends Family Health History Tool to Chinese-Speaking Employees

and Individuals Worldwide
Boston September 25, 2006 Brigham and Womens Hospital (BWH) has launched a Chinese
version of the U.S. Surgeon Generals My Family Health Portrait on its website to assist its
diverse workforce of 12,000 and support individuals worldwide who are interested in organizing
their familys health history. The BWH Family History Project, funded by the National Human
Genome Research Institutes Education and Community Involvement Branch, now has its tool
publicly available on the hospitals website in Chinese, Polish, Portuguese, French, Spanish and
English.
We are giving our employees the opportunity to uncover their familys health history, and share
this information with their family and doctors, said Michael Murray, MD, director of the BWH
Family History Project and clinical chief of the hospitals Genetics Division. In doing this, we
hope to create an online resource for people around the world.
The National Human Genome Research Institute selected BWH in the fall of 2005 as the first
academic medical center to pilot this tool. The BWH Family History Project developed as a
voluntary and confidential service open to all hospital employees. Since November, the hospital
has been collecting survey data from participating employees to better understand how people
use their health history and how this tool can be improved.
This fall we plan to work with patients to incorporate their familys comprehensive health
history into their electronic medical records, said Murray. Health experts believe that a
thorough family health history can be used to improve medical decision-making and subsequent
patient care.
For instance, if three of your family members have had breast cancer and youve added this
information to your record, then your doctor might suggest an alternative screening strategy to
reduce your risk of developing this disease, said Murray.
For more information about The BWH Family History Project, or to access the web-based tool in
English or Spanish, visit the hospitals website or click here. To download a PDF of the tool in
other languages including Chinese, click the links below:
Chinese
Polish
1
7A1. Press Release for the Chinese Translation of "My Family Health
History"
Portuguese
French
BWH is a 747-bed nonprofit teaching affiliate of Harvard Medical School and a founding
member of Partners HealthCare System, an integrated health care delivery network. BWH is
committed to excellence in patient care with expertise in virtually every specialty of medicine
and surgery. The BWH medical preeminence dates back to 1832 and today that rich history in
clinical care is coupled with its national leadership in quality improvement and patient safety
initiatives, dedication to educating and training health care professionals, and strength in
biomedical research. With $370M in funding and more than 500 research scientists, BWH is an
acclaimed leader in clinical, basic and epidemiological investigation - including the landmark
Nurses Health Study, Physicians Health Studies, and the Women's Health Initiative. For more
information visit www.brighamandwomens.org.
7A. Press Release for the Chinese Translation of "My Family Health Portrait"
BWH
2006 9 29 Brigham and Womens HospitalBWH
12,000
BWH National Human
Genome Research InstituteCommunity Involvement Branch
BWH Michael Murray
2005 BWH BWH

11
Murray
Murray
BWH
PDF
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..
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Appendix 8A. Worldwide Media Coverage of

Project staff was also able to regularly monitor the numbers of media visitors to the
internet sites.
..
..
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..
..
My Family Health Portrait

Media Hits: January 2005 - June 2007
Date
Outlet
Outlet Type
Headline
2/18/2005
11/12/2005
WBZ-TV
The Sun News
Television station
Newspaper
11/16/2006
Boston Herald
Newspaper
11/15/2005
The NIH Record
Magazine
11/15/2005
WebHire.com
Online
11/15/2005
EurekAlert!
Online, trade/science
11/21/2005
WTOC-TV
Television station
11/23/2005
Senior Journal
Online, consumer
11/21/2005
Boston Globe
Newspaper
11/26/2005
WTNH-TV
Television station
12/1/2005
Kansas City infoZine
Online, consumer
12/2/2005
UAB Health System
Online, trade/medical
12/5/2005
Managed Care Weekly

Digest
Newsletter - online
"MEDICAL HISTORY; U.S. Surgeon

General urges Americans to know
their family health histories"
12/5/2005
Health & Medicine

Week
Newsletter - online

Newsletter - online

Newsletter - online

12/6/2005
12/6/2005
Science Letter
Life Science Weekly
"The New Family Tree"

"Healthful Advice"
"Docs: Talk turkey - and health
history - at the dinner table"
"U.S. Surgeon General Urges
Americans to Know Their Family
Health History"
Health History"
Health History"
"Valuable Information about your
Health"
"Calling on all Americans to know
their family history"
"Brigham staff to track family
medical history"
"Creating a family medical history"
Health History"
Health History"
Newsletter - online

Newsletter - online

Newsletter - online

Newsletter - online

Genomics & Genetics

Weekly
Newsletter - online

12/8/2005
Hospital & Nursing

Home Week
12/9/2005
Surgery Litigation &

Law Weekly
12/9/2005
Medicine & Law

Weekly
12/9/2005
12/9/2005
12/10/2005
2/1/2006
2/2/2006
MD Week
Obesity, Fitness &

Wellness Week
Hospitals & Health
Networks
Harvard University
Gazette
Newsletter - online
Magazine,
trade/industry
Newspaper
8/15/2006
University Affairs
The Sampson
Independent
Newspaper
8/15/2006
8/23/2006
Belfast Telegraph
Irish Independent
Newspaper
Online, news
11/1/2006
PR Newswire
Wire Service
11/1/2006
Yahoo!
Online, news
11/1/2006
Forbes
Magazine - online
11/15/2006
States News Service
Government
11/16/2006
National Institutes of
Health
Online, trade
2/5/2006
Magazine

"Family Portraits"
"Brigham pilot program connects
people with family histories"
"Brigham pilot program connects
people with their family histories"
"Genetic testing what's so great
about knowing your fate?"
"Genetic testing what's so great
about knowing your fate?"
"Family fortunes"
"Can We Talk? Americans Urged to
Start the Conversation About Their
Family Medical History"
"New Family Health History Projects
Focus on Alaska Native,
Appalachian Communities"
"New Family Health History Projects
Focus on Alaska Native,
Appalachian Communities"
11/16/2006
11/20/2006
11/21/2006
Kansas City infoZine

USA Today
KARE-TV
Online, consumer
Newspaper
Television station
11/22/2006
MediLexicon
Online, trade
12/4/2006
Boston Herald
Newspaper
12/4/2006
Managed Care Weekly

Digest
Newsletter - online
12/5/2006
Health Risk Factor

Week
Newsletter - online
12/5/2006
Disease Prevention
Week
Newsletter - online
12/6/2006
Physician Law Weekly Newsletter - online
12/6/2006
Genetics &
Environmental Health
Week
Newsletter - online
12/7/2006
State & Local Health

Law Weekly
Newsletter - online
12/7/2006
Hospital Law Weekly
Newsletter - online
12/7/2006
Hospital & Nursing

Home Week
Newsletter - online
12/7/2006
Genetics &
Environmental
Business Week
Newsletter - online
12/8/2006
MD Week
Newsletter - online
"Know Your Family Health Histories,

Acting Surgeon General Urges
Americans"
"Know your family history"
"Know your family history"
"Americans Urged To Know Their
Family Health Histories By Acting
Surgeon General"
"Med History Often Elusive to
Adoptees"
"GENETICS & GENOMICS; New
family health history projects focus
on Alaska Native and Appalachian
communities"
communities"
communities"
communities"
communities"
communities"
communities"
communities"
communities"
communities"
12/8/2006
Genomics & Genetics

Weekly
Newsletter - online
12/9/2006
Genetics &
Environmental Law
Weekly
Newsletter - online
12/9/2006
Law & Health Weekly
Newsletter - online
12/10/2006
Preventative Medicine
Week
Newsletter - online
12/10/2006
Hospital Business
Week
Newsletter - online
12/10/2006
Disease Risk Factor

Weekly
Newsletter - online
12/1/2006
Spring 2006
6/15/2007
Hospital Network.com Online, trade

WBUR
Radio station
WHDH-TV
Television station
6/22/2007
6/22/2007
WRC-TV
WIS-TV
Total Hits: 59
Broadcast Outlets: 8
Print Outlets: 11
Other Outlets: 40
Television station
Television station

communities"
communities"
communities"
communities"
communities"
communities"
"New Family Health History Projects"
"Report by Martha Bebinger"
"Family Ties"
"Web Site Helps Track Family
Medical History"
"Health Alert Family history"
Appendix 9A. BWH FHP Intra- and Internet

websites
The BWH FHP staff developed both intra- and internet websites to provide interested
employees and the general public with more information about the project and family
health history collection. The websites were promoted and advertised throughout the
hospital by project staff and volunteers and again through the help of the Public Affairs
Department.
Screen Shots of Websites:
[1] US Surgeon Generals Family History Website
[https://familyhistory.hhs.gov/] My Family Health Portrait
[2] BWH FHP Internet Website
[http://www.brighamandwomens.org/familyhistory] Family History Project
Page
[3] BWH Intranet Page Pike Notes
[www.brighamandwomens.org/feature_nov052.asp] not accessible outside
the hospital, expanded launch in March 2006 includes Family History success
stories
[4] BWH Gene Talk [http://genetalk.bwh.harvard.edu] includes family history
information, links to other sites, and foreign language versions of Family History
Tools
..
..
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..
9A1. U.S. Surgeon General's Family History Website
9A2. BWH Public Website
9A3. BWH Intranet Page - Pike Notes
9A4. BWH Gene Talk
Appendix 10A. Family History and Hard to Reach

Populations
Project staff recognized that not all individuals are able to obtain family health history
from their relatives due to family relationships or in cases of adoption. In an effort to
address these challenges, staff created Approaches to special circumstances.
..
..
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..

FAMILY HEALTH HISTORY: Approaches to Special Circumstances
I.
"Adoption: When a Family History is not available"

a. A Personal Viewpoint [Kris DeGraw Danna, BWH Director of Volunteer Services]]
It seems simple enough. Diverse media outlets and community organizations throw
messages and events your way requesting participation in or a celebration of your
racial and ethnic heritage. You may not know the biological origins of your existence,
yet you receive daily requests to share this unknown information. Family members
ask for faithful participation in the observance of certain holidays. Peers and
colleagues ask you to act consistently with an assured set of characteristics. Even
applications for school and work ask you. And now your doctor wants to know.
Although you are not able to complete the Surgeon Generals Family Health Portrait,
you can accomplish the mission of creating a medical tool. You do not have access
to your relatives health history, therefore cannot know what screenings in which to
participate, BUT:
x Be savvy, not obsessed, about early stages of chronic illnesses, their
symptoms, and possible environmental igniters. Use your common sense. If
you feel you or your child(ren) display appropriate signs of early stages, dont
wait. Talk to your doctor or health provider immediately. Be proactive about
informing these providers of your unknown family history.
x If you suspect that any portion of your biology is tied to a certain background
or ancestry, learn more. Take notes. Become observant and aware of facts
and research in these particular areas. Chances are your intuition may be
closer to reality than you know or are able to uncover.
x Be healthy! Dont risk the arrival of a health condition due to lifestyle
decisions such as smoking, drinking, sun exposure or unhealthy eating
habits.
x Keep a record of your own medical history. Pay close attention to detail
since you are the first in line. Talk openly with your children and/or parents
about what you would like to accomplish.
If you are interested in state and federal laws regarding finding an adoptees
birthparent or support for an adoptee, your state governments health department has
easily accessible written and online resources.
RELATED LINKS
Adoption Journeys of Massachusetts
1-800-972-2734
http://www.adoptionjourneysma.org
The Center for Adoption Research

http://www.centerforadoptionresearch.org
Mass Adoption Resource Exchange, Inc. (MARE)

(800) 54-ADOPT
http://www.mareinc.org
Open Door Society

http://www.odsacone.org
The Center for Family Connections

(617) 547-0909
http://www.kinnect.org/

b. A Medical Viewpoint [Dr. Michael Murray, Director of the BWH Family History
Project]
Obtaining and maintaining a family health history is but one task within the larger
undertaking of promoting the health of yourself and your family (biological or
adoptive). As someone who has been involved in promoting the use of this old
medical tool (i.e. the family health history), I regret that anyone has to experience
these efforts as a reminder of separation from biological relatives through adoption
(or other forms of estrangement). However there are many other things that can and
should be done to promote ones health, and Kris comments set the stage for
focusing on some of those other things.
As a physician I think about health as really coming down to the combined impact of
two great forces, they are genes and environment (or more classically nature and
nurture). One of the reasons for the renewed focus the family health history at this
time is the appreciation that many families share both genes and environment. So
while adoptive families dont share genes they do share environment, and for some
common health problems, like asthma and diabetes, environmental risk factors like
smoking and diet are very significant. Therefore none of us should completely
discount the influence of those around us on our risk for health or disease.
With all of the current interest in genes and genetics, we all need to be careful not to
emphasize inherited risk for disease to the exclusion of modifiable risks for disease.
For anyone interested in putting their own disease risk into a context that considers
environmental risks check out the website Your Disease Risk
(http://www.yourdiseaserisk.harvard.edu/ ) hosted by the Harvard School of Public
Health.
B. Events
Appendix 1B. Detailed Planning, Kick-Off, and
Launch Events Calendar (September 2005
through February 2006)
The FHP staff created an events calendar to chronicle the events, meetings, and
outreach organized throughout the initial phases of the project. The events calendar
was distributed weekly at the Family History Project team meeting for staff to review
and add events, as necessary.
..
..
..
..
..
1B. FHP Kick-off Events Calendar

FAMILY HISTORY PROJECT CALENDAR
Events, Meetings, and Outreach
SEPTEMBER
Thursday
09/29/05
Conference Call - US Surgeon General/Family History

OCTOBER
Friday
10/14/05
Presentation to introduce the Project to the Hospital Clinical Department

Chiefs by Drs. Murray, Morton, and Maas
Thursday
10/18/05
Presentation to introduce the Project to the Hospital Senior Management

Group by Drs. Murray, Morton, and Maas
Thursday
10/27/05
Presentation to introduce the Project to members of the Hospitals

Development team
Friday
10/28/05
Meeting to discuss Hospital space needs for Project;

Meeting with graphic designer to begin brochure production
Monday
10/31/05
Project team meeting
NOVEMBER
Wednesday 11/2/05
Meeting to discuss Hospital space needs for Project
Monday
11/7/05
Project team meeting; Hospital-wide Town Hall meeting with Drs.

Gottlieb, Morton, and Murray introducing the Project to employees
Friday
11/11/05 Telephone conference with Third-Party Validators regarding

upcoming press conference.
Monday
11/14/05
Project team meeting; Information booth at Hospital cafeteria
Tuesday
11/15/05
National press conference to launch the Project and to roll out version
2.0 of the Surgeon Generals Tool; Remarks by Drs. Collins, Gottlieb,
Morton, and Mitchell
Wednesday 11/16/05
Presentation to introduce the Project to the Hospitals Administrative

Leaders Group
Thursday
11/17/05
National Conference on Family History in Atlanta (M. Murray)
Friday
11/18/05
National Conference on Family History in Atlanta (M. Murray)

Monday
11/21/05
Project team meeting; Organizational meeting for Project volunteers;

Presentation to introduce the Project at New Employee Orientation;
E-mail Blast Re: Family History Day to All Genetics Staff
Tuesday
11/22/05
Project volunteers greet employees on their way into work and hand out
information about the Project; Information booth at Hospital cafeteria;
Public Affairs Department weekly email (i.e. This Week at BWH)
includes notice Project launch; Coverage in the weekly hospital
newsletter (i.e. BWH Bulletin); Family Practice Grand Rounds at
Cambridge Hospital on Family History (M. Murray); Web design
meeting with graphic designer and web designer
Wednesday 11/23/05
Hospitals Executives and Senior Staff (Drs. Gottlieb, Maas,

Kucherlapati, and Morton) greet employees on their way into work and
hand out information about the Project; Presentation to introduce the
Project to Nursing Leadership; Information booth at Hospital cafeteria;
Local live television news coverage (Fox 25 interviews Dr. Murray).
Thursday
11/24/05
Thanksgiving Day 2nd Annual National Family History Day; Project

team greet employees on their way into work and hand out
information about the Project.
Monday
11/28/05
Project team meeting; Presentation to introduce the Project at New

Employee Orientation
Tuesday
11/29/05
Presentation to introduce the Project to the Director of Interpreter

Services
Wednesday 11/30/05
Information booth at Hospital cafeteria; Dr. Mortons presentation to

BWH Cytogenetics Lab; Meeting with Thorn librarian to discuss Project
use of private computer room within library at designated times
DECEMBER
Thursday
12/01/05
Dr. Francis Collins, Project Team, and Hospital Administration address

BWH Employees in Hospital Auditorium
Friday
12/02/05
Meetings to discuss incorporation of Family History into Hospital

Electronic Medical Record (M. Murray and P. Zumpfe)
Monday
12/05/05

Wednesday 12/07/05
Presentation by Dr. Morton at Advisory Committee of the Office of

Womens Careers
Friday,
HRSA conference call on Family History funding opportunities;

Partners Healthcare conference call on Electronic Medical Record (i.e.
LMR) updates including Family History demonstration.
12/09/05

Monday
12/12/05

Tuesday
12/13/05
Meeting with Hospital web developers
Wednesday 12/14/05
Presentation to introduce the Project at BWH Medical Staff Meeting by

Dr. Murray; Partners Healthcare Information Technologies Meeting
regarding the incorporation of Family History information into the
electronic medical record
Monday
12/19/05

Employee Orientation; Information booth at Hospital cafeteria;
Tabletop Project information signs in Hospital cafeteria
Tuesday
12/20/05
Meeting with Hospital Development Representatives regarding ongoing

Project funding strategies
Thursday
12/22/05
Information booth at Hospital cafeteria; Tabletop Project information

signs in Hospital cafeteria
Wednesday 12/28/05
Installation of English, Spanish, and French Voicemail Boxes and a new

dedicated Project telephone line; Tabletop Project information
signs in Hospital cafeteria
JANUARY
Tuesday
01/03/06

Employee Orientation; Meeting with Nursing Diversity Fellow; Testing
of computer hardware in Hospital Library
Wednesday 01/04/06
Testing of computer hardware in Hospital Library
Thursday
01/05/06
Data entry session for mailroom employees in Hospital Library
Friday
01/06/06
Conference call with website developer
Monday
01/09/06

Employee Orientation; Posters and information booth at offsite
location (One Brigham Circle Building); HL7 Conference (P.
Zumpfe)
Tuesday
01/10/06
Data entry session for employees at One Brigham Circle; MyPHR

Project Meeting; HL7 Conference (P. Zumpfe)
Wednesday 01/11/06
HL7 Conference (P. Zumpfe), Staff Activities and Advisory Committee

(SAAC) Meeting (K. Holbrook)
Thursday
Data entry session for mailroom employees in Hospital library;

Pictures for BWH Bulletin; HL7 Conference (P. Zumpfe);
01/12/06

Conference call with web designer
Friday
01/13/06
Planning visit and presentation to introduce the Project to Practice

Managers at offsite location (i.e., 850 Boylston St. Building);
HL7 Conference (P. Zumpfe)
Tuesday
01/17/06

Employee Orientation; Hospital space planning meeting
Thursday
01/19/06
Project Staff training in Intranet site management (K. Holbrook)
Monday
01/23/06

Employee Orientation; Walk-through of survey drop-off sites
Thursday
01/26/06
Thorn Library Picture for Harvard Gazette Article
Monday
01/30/06
Telephone conference with Surgeon General; Meeting with HIS

Manager to introduce Project
Tuesday
01/31/06

Employee Orientation; Presentation to HIS employees
FEBRUARY
Wednesday 02/01/06
Grand Rounds Presentation in OB Dr. Morton
Thursday
02/02/06
NCHPEG Conference K. Holbrook
Friday
02/03/06
NCHPEG Conference K. Holbrook; HL7 teleconference P. Zumpfe
Monday
02/06/06
Data entry session for patient care employees in Cabot Atrium in

conjunction with Occupational Health Quarterly Tuberculosis Screening
Program
Tuesday
02/0706

Program; HL7 teleconference P. Zumpfe
Wednesday 02/08/06

program; SAAC meeting (K. Holbrook)
Thursday

program; Project article and picture in Harvard University Gazette;
Teleconference with web design team; HL7 teleconference P. Zumpfe
02/09/06

Friday
02/10/06

program; Data entry session for Practice managers at offsite location
(850 Boylston St)
Monday
02/13/06

Wednesday
02/15/06 Meeting to organize efforts of college volunteers; Conference call with

Co-director of Research and Professional Development at Brandeis
University to introduce Project as potential thesis for genetic counseling
graduate student
Friday
02/17/06 Meeting with J. Ashby re: Springtime Photo Gallery K. Holbrook & M.
Murray
Tuesday
02/21/06

Employee Orientation; Report to Dr. Gottlieb
Wednesday 02/22/06
Meeting with college student volunteers; Information booth at Hospital

cafeteria
Monday

Employee Orientation; Presentation to introduce the Project to
Environmental Services.
02/27/06
..
..
..
..
..
Appendix 2B. Monthly Project Focus

The FHP staff developed a targeted plan for project focus and outreach goals during
each month. This document was also distributed and discussed each week at FHP
team meetings. Attention was given to ways in which to tie the FHP to holidays,
observances, and special hospital events occurring in a given month.
..
..
..
..
..
2B. Monthly Focus

2006 Monthly Themes and Outreach Focus
2005
2006
September/October
Pre-launch Preparation
November/December
Project Launch Hospital Wide Events

and Electronic Communication
January/February
Topic/Theme: BWH Family beyond Francis St

Outreach Focus: Off-Site Employees
March
Topic/Theme: Initial Participant Survey

Outreach Focus: Nursing & Physicians
April
Topic/Theme: Your Family Portraits

Event: Photo Gallery BWH Employee Familys
Outreach Focus: Dietary & Environmental
Services, Transport services
May
Topic/Theme: Initial Practice Survey

My Mother/My Daughter
Event: Mothers Day
Outreach Focus: Administration, Womens Health
June
Topic/Theme: My Father/My Son

Event: Fathers Day
Outreach Focus: HR, Clinical labs, Pharmacy
July
Topic/Theme: Cosmopolitan BWH

Event: Celebrate Americas130th birthday
Outreach Focus: International Employees,
Interpreter services, & Researchers
August
Topic/Theme: Tell Kids their Story

Event: Storytellers Day
Outreach Focus: Employees with children
September
Topic/Theme: My Grandparents/My Grandchild

Event: Grandparents Day
Outreach Focus: Information Services,
Engineering
October
Follow-up Practice Survey

Final Participant Survey
November
BWH We are Family Group Picture

Family History Day
..
..
..
..
..
Appendix 3B. Springtime Family Photo Gallery

Event
In Spring 2006, all employees were invited via electronic communication and
personally by project staff and volunteers to submit photographs of their families to
the BWH FHP for the Brigham and Womens Hospital Family History Project
Springtime Family Photo Gallery. Employees could share photographs of their
families to the BWH FHP, with family deliberately broadly defined. Photographs
were submitted in one of two ways: electronically to the project email address, or
delivered to Photo Drop-Off sites around the hospital and off-site locations. Every
photo entry required a submission form with the employees contact information.
Hard copies of photographs received were electronically scanned, and the actual
photographs were returned to the employees. Photographs submitted to the
Springtime Photo Gallery were affixed to large, white wooden boards and arranged
in the hospitals main lobby for employees and visitors to browse 24 hours per day
over a two week period.
[1] Photo Submission Form
[2] Photos
..
..
..
..
..
3B1. Springtime Family Photo Gallery Submission Form
THE FAMILY HISTORY PROJECT

SPRINGTIME FAMILY PHOTO GALLERY
WILL BE DISPLAYED IN THE
BWH 75 FRANCIS ST. LOBBY APRIL 24 28
All BWH EMPLOYEES ARE INVITED TO
DISPLAY YOUR PHOTO(S)

POPULAR THEMES OF PHOTOS FOR THE GALLERY INCLUDE:
FAMILIES (INCLUDING PETS), BABY PICTURES OF YOU, CHILDREN,
GRANDCHILDREN, FAMILY REUNIONS,
CELEBRATION OF FAMILY HERITAGE, WEDDING/ENGAGEMENT,
PHOTOS WITH FELLOW BWHers, etc.
ALL PARTICIPANTS WILL BE ELIGIBLE FOR A RAFFLE TO GIVE AWAY
AU BON PAIN GIFT CERTIFICATES
SEE OTHER SIDE FOR ENTRY FORM & INSTRUCTIONS
3B1. Springtime Family Photo Gallery Submission Form
Thanks for submitting a photo for BWH Family Photo Gallery

PLEASE COMPLETE THIS FORM AND FOLLOW INSTRUCTIONS BELOW
Name: ___________________________________________________________________________________
Department: _____________________________ Phone #: ________________________________________
Email: ___________________________________________________________________________________
Interoffice Mail Address: ____________________________________________________________________
# of Photos Submitted _____ Description:_____________________________________________________
INSTRUCTIONS
There are three ways to get us your photo:
[1] Email photo as an attachment to: familyhistoryproject@partners.org
[2] Interoffice mail to: Family History Project, Division of Genetics, NRB Room 455E
[3] Drop off: Family Photo Gallery Deposit Box (in 75 Francis Street Lobby - April 10th till April 20th)
PRINTS WILL BE RETURNED TO YOU AND WE WILL EMAIL YOU AN

ELECTRONIC COPY OF YOUR PHOTO
(Please print your name and phone # on the back of each photo)
Photo Mailing & Drop-Off Deadline is 4/20/06

(please place photo in an interoffice mail envelope with this form)
Electronic Photo Submission Deadline is 4/24/06
(please email to familyhistoryproject@partners.org with this form)
3B2. Springtime Family Photo Gallery Photos
3B2. Springtime Family Photo Gallery Photos
Appendix 4B. Take Our Children to Work Day Event

RADM Kenneth Moritsugu, MD, MPH, then Deputy Surgeon General of the United
States, visited BWH on Take Our Children to Work Day and delivered a talk to
employees and their children about the importance of knowing and recording ones
family history. The children had the opportunity to ask Dr. Moritsugu questions and to
participate in a group photograph with the Deputy Surgeon General.
[1] Informational PowerPoint Presentation
[2] Photographs of visit to BWH from RADM Kenneth Moritsugu, MD,
MPH, during BWHs Take Our Children to Work Day
[3] Audio file Martha Bebinger, journalist for Bostons NPR affiliate,
WBUR, interviewing BWH employees during the Springtime Photo
Gallery [aired on WBUR June 12, 2006].
http://genetics.bwh.harvard.edu/genetalk/audio/me_0612_1.rm
4B1. Informational PowerPoint Presentation
Make History Today!

Brigham and Women
Womens Hospital
Name
Date
Genetics Division,
Department of Medicine
Brigham and Women
Womens Hospital
"Knowing your family's history

can save your life"
Dr. Richard H. Carmona,
Carmona,
U.S. Surgeon General
Request a Presentation for Your Group or Department

Family History Project staff are available to talk with departments and groups about the project and answer employees'
questions. If you would like to set up a presentation for your group, contact Karen Holbrook, Family History Project
coordinator, at kholbrook1@partners.org or Michael Murray, clinical chief in the Division of Genetics and principal
investigator for the Family History Project, at mmurray@partners.org.
The BWH Family History Project provides the tools to organize your health history information into a family tree, using
the U.S. Surgeon General's "My Family Health Portrait." You can find the form to fill out electronically at
https://familyhistory.hhs.gov
IF I DON
DONT HAVE COMPUTER ACCESS,
CAN I STILL PARTICIPATE?
For individuals who are unfamiliar with or
do not have a computer, Project staff will
be available for assistance.
A paper tool is also available.
BWH FAMILY HISTORY PROJECT
DATA ENTRY SESSIONS
CAN I COMPLETE MY FAMILY HEALTH

PORTRAIT
PORTRAIT DURING WORK HOURS?
Yes, your supervisors have been
encouraged to provide you with 1010-20
minutes to enter your family history data.
However, you must arrange for this time in
advance with your supervisor.
BWH Mailroom Staff
CONTACT THE BWH FAMILY HISTORY

PROJECT STAFF
PARTICIPATION SURVEYS
What we hope to learn:
phone (617(617-525525-4777) or
).
email (familyhistoryproject
@partners.org).
(familyhistoryproject@partners.org
How to make it more user friendly

How to make it more useful for
patients
How to make is more useful for
health care providers
Make History Today!
Name
Date
4B2. Photographs of Visit to BWH from RADM Kenneth Moritsugu,

MD, MPH
TODAY AT 2:30PM IN THE

BORNSTEIN AMPHITHEATER
Dr. Kenneth Moritsugu

The Deputy Surgeon General of the United States
WILL SPEAK WITH BWH EMPLOYEES

ABOUT THE
US SURGEON GENERALS
FAMILY HISTORY INITIATIVE
and the
BWH FAMILY HISTORY PROJECT

MD, MPH

MD, MPH
4B3. WBUR Transcript

Interactive Center Launched on May 19, 2006
Launch of the Brigham and Women's Hospital Family History Project's
Interactive Center, where BWH employees can be guided through "My Family
Health Portrait" or enter their family health history information with FHP staff
assistance.
.put your name in herejust like that.this is about your health, are you a pretty
healthy person?
Narrator: Its family day here at the Brigham and Womens Hospital and Chantal Kelly,
a genetic counselor is helping 11-year old Gabriela Juliano create an electronic family
medical history.
Gabriela: [filling in the medical history form] No, no., I dont have diabetes.
Chantal: [Assisting with remaining family history] and you dont haveyou said, no
asthma, no allergies, nothing else?
Gabriela: No, not that we know of.
Chantal: Excellent
Narrator: Gabriela checks no for six common chronic, sometimes preventable,
diseases-stroke, heart disease, diabetes and three types of cancer. Gabriela clicks opens a
page with the same questions for each family member building a medical family tree.
Gabriela: My moms name is Catherine.shes like-allergic to dogs.
Chantal: Does she have asthma? Okay, thats important to know.

Narrator: Gabriela glances back at her father, Robert Juliano, a cardiologist at the
Brigham for a few answers. She rolls her eyes when dad suggests that her brother
Dantes obsession with hockey is a medical condition. Gabriela remembers, without
help, that one grandmother has diabetes and that her grandfather has heart disease.
Chantal: And this is for your grandmother on your moms side?
Narrator: But many of the Brigham employees working on their electronic medical
histories say that they grew up with little or no information about the genes they
inherited. Ann Haley, the manager of office services is also the daughter of a doctor.
Ann Haley: We have everything in our family; weve got addictions, weve got
melanoma, diabetes. You know, big things that you would want your doctor to know
about and its funny because growing up in a medical family you would think that we
would be aware of all of this and we werent.
Narrator: Haley says that not knowing has taken a toll on her family
Ann Haley: Every single relative practically that I have has diabetes type 2 and why
didnt we think that we were all going to get it and make sure that we could prevent it by
losing weight-we all waited till it was too late and then we all got it.
Narrator: The U.S. surgeon general says a complete family medical history can be as
important to good health as high tech testing and other procedures. Dr. Michael Murray
heads the family history project at Brigham and Womens.
Dr. Murray: In 2006 there may only be 3 or 4 diseases that we can really take a family
history and say these families need to be tested for these genes but I think that in 2010
that number will be much larger and in 2015 it will be larger still.
Narrator: The program designed by the Surgeon General only asks about six diseases
but leaves space to add information about any other medical conditions in the family.
Murray who is also the clinical chief of genetics at Brigham and Womens says it makes
sense to look for patterns in health problems that might be adopted as well as inherited,
mental illness, addictions, obesity or lung diseases.
Dr. Murray: the value of the tool goes beyond just the genetics. We know that diseases
run in families not only because of shared genes but also because of shared
environmental factors.

Narrator: The project started last fall. Murray says that he doesnt yet know how many
of the Brighams 12,000 employees are participating.
Narrator: Some cant. Chris DeGraw Dana is the director of volunteer and community
services.
DeGraw Dana: I was adopted in the sixties and they did not have any legislation in place
where I as the birth child would be able to find my birth parents. Its a closed record
adoption. I know how tall they are and what color their eyes and hair were but thats
about it.
Narrator: DeGraw Dana has volunteered to help other Brigham employees who are
frustrated because they are estranged from their family or have lost family members with
key medical information. She says people have to accept that and focus on their own
health. The biggest obstacle for some employees at the Brigham has been gathering
accurate information. In one case there was a fight over a holiday dinner about how a
relative died and Phillistine Ongondo says it took more than a dozen conversations with
family members before she got what she thinks is a complete medical history.
Ongondo: What I did was I said is you want your children to be safe..you use the
children factor sometimes, you have to kind of coax them along there is always some
resistence-you have to go after them one at a time until I got them to do it.
Narrator: Ongondo who works in the department of physician services discovered
what her grandmother had described as stomach problems was really colon cancer, what
another relative called, sugar, was diabetes, but that was overshadowed by asthma but
that was also ignored until it led to an infection In Ongondos family there is also
hypertension and high cholesterol that no one wants to talk about.
Ongondo: I think its fear. If you dont talk about it - maybe it will go away. And I
think a lot of families do that but in the minority family they just dont want to burden
their children a lot of times, with these problems. So..these are all things that we are
finding out now and its interesting, a little scary but also I feel empowered now because
now I can pass this to my children and my children will have a better chancea better
chance of surviving.

Narrator: Ongondo says she is confident that her medical history will be secure. But
some employees are hesitant to take part because they are worried about the privacy of
the record. It is created on a secured website that can be accessed only by that
participant who can then copy it to paper or a CD. Organizers say that participants must
be cautious about sharing the information with anyone but family members and
physicans.
Narrator: For WBUR, Im Martha Biebinger.
..
..
..
..
..
Appendix 5B. BWH 2006 Street Beat Event

Photograph of T-shirt and Logo
The BWH Staff Activities and Advisory Committee (SAAC) sponsors an annual
outdoor BWH summer event entitled Street Beat, which highlights the diversity of
the BWH workforce by showcasing ethnic cuisines and performers from various
cultures throughout the world. Each year, Street Beat has a different theme and
creates a promotional logo to advertise the event. The theme for the 2006 Street
Beat event was Strong Roots, Many Branches, and the logo was a large tree: a
natural representation of the family tree created when one uses My Family Health
Portrait.
..
..
..
..
..
5B. BWH 2006 "Street Beat" T-shirt and Logo
..
..
..
..
..
Appendix 6B. BWH FHPs Ice Cream Social

Event Photograph of Celebrity Scooper
To further boost participation during the Fall survey period and to thank employees
for their participation, the BWH FHP offered an incentive to employees who returned
a completed survey. Project staff decided to host an Ice Cream Social event within
the hospital cafeteria for all BWH employees. Employees were invited to make their
own sundaes during one of two ice cream social sessions. Given the fact that the
hospital is a 24 hour a day workplace, socials were scheduled at 3pm-5pm and
10pm-12am. Admission into either session required that the employees had a
completed BWH FHP Fall survey (see Appendix 3C). Project staff and volunteers
were available during both sessions to distribute blank surveys, collect completed
surveys, and to scoop ice cream for participating employees. Several of BWHs
Executive Management Group, including hospital Associate Chief Medical Officer Dr.
Robert Goldszer, rolled up their sleeves along with our volunteer staff to help scoop
ice cream for the approximately 1000 employees who participated across the two
sessions.
..
..
..
..
..
6B. BWH FHP's "Ice Cream Social" Event Photograph
..
..
..
..
..
Appendix 7B. Photograph of BWH T-shirt

Awarded for Project Participation
All participants were offered the BWH FHP commemorative T-shirt pictured here. Tshirt distribution occurred in November 2006 as part of the final outreach campaign
for participation.
..
..
..
..
..
7B. Photograph of BWH T-shirt Awarded for Project Participation
..
..
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..
..
Appendix 8B. Family History Day Ceremony

Photograph of BWH FHP Participants in
Hospital Lobby
Family History Day 2006 was celebrated in late November. Some of our estimated
3500 participants gathered on that day to receive their t-shirt and pose for this photo
with Dr. Gary Gottlieb, the hospital president.
..
..
..
..
..
8B. Family History Day Ceremony Photograph
..
..
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..
..
C. Data and Data Collection

Appendix 1C. IRB Notification of Exemption
A proposal for the Brigham and Womens Hospital Family History Project was
submitted to the Institutional Review Board (IRB) of Brigham and Womens Hospital
for their review. On November 25, 2005, the principal investigator was notified of the
proposals approval. As the BWH FHP was not designed to either collect or analyze
an employees family health history, the BWH FHP received an exempt status from
the hospitals IRB.
..
..
..
..
..
1C. IRB Notification of Exemption
..
..
..
..
..
Appendix 2C. Spring (Preliminary) Participation

Survey March 2006
Data collection for the BWH FHP included two separate rounds of anonymous
survey-based feedback on the usability of the My Family Health Portrait tool. The
first of the two survey periods occurred in March 2006, approximately one-third of the
way through the project. Surveys were returned either electronically or at drop-off
locations within the hospital and off-site locations.
Forty-seven percent of survey respondents answered that they had already
completed their family histories using My Family Health Portrait.
A group of 24 BWH employees agreed to a follow up telephone conversation. These
interviews allowed for better understanding of how to target outreach in the
remaining months of the project.
[1] Survey Instrument
[2] Telephone follow-up interview of participants
..
..
..
..
..
2C1. Spring Participation Survey

Employee Participant Survey
(it will take approximately five minutes to complete this survey)
Date of this Survey __/__/__
Age
Gender
___
___ Female
___ Male
Ethnicity or Race (mark one or more)

___ American Indian or Alaska Native
___ Asian or Pacific Islander
___ Black or African American
___ Hispanic or Latino
___ White or European American
___ Other, please specify:____________________________
1. Which of the following describes your employment at BWH? [check one]

___ Management
___ Health care professional
___ Service
___ Administrative
___ Researcher
___ Not sure
___ Non-employee
2. Did you complete the Surgeon General's "My Family Health Portrait"?
___ Yes
___ No
If no, why not? ____________________
If you answered no to question #2 you may stop here (or go to
https://familyhistory.hhs.gov/ to participate now). Thank you for completing this
survey.
If you answered yes to question #2, please continue this survey.
-1-
3. What motivated you to complete your family health history using the Surgeon
Generals My Family Health Portrait? [check all that apply]
___ I thought it would be interesting
___ I thought it would be fun
___ I thought it could be beneficial to my health
___ I did it for the sake of a family member
if you had a family member in mind, was it
___ a parent
___ a brother or a sister
___ a child
___ other [relationship? ______________ ]
___ I was encouraged by my co-workers or supervisors
___ Other, please explain ______________________________
4. How long did it take you to get through the My Family Health Portrait the first
time? (almost everyone will leave blanks and have I dont know answers at first)
[check one]
___ Less than 10 minutes
___ 10-20 minutes
___ 20-30 minutes
___ 30-60 minutes
___ More than 1 hour
5. How many times have you returned to your family health history document to add
or change information? [check one]
___ None
___ 1
___ 2-3
___ 4-5
___ More than 5
6. What difficulties did you have in completing your family health history? [check all
that apply]
___ Discussing the subject of health history with family members
___ Knowing what questions to ask my family members
___ Obtaining the health history information
___ Knowing where or how to enter information
___ Using the computer version of the history tool
___ Other, please explain ____________________
___ None
7. Would you encourage others to participate in the BWH Family History Project?
___ Yes
___ No
8. Did you learn anything new about the health of your relatives in the process of
completing your family health history?
___ Yes
___ No
-2-

9. Did you share anything about your health with a relative in the process of
___ Yes
___ No
10. What did you do with the family health history portrait you created? [check all that
apply]
___ Kept it to myself
___ Shared it with my health care provider
___ Shared it with my family members
which family members did you share it with? [check all that apply]
___ a parent
___ a child
___ other [relationship? __________]
___ Other, please explain ___________________________
11. How many relatives did you talk to in completing your family health history?
[check one]
___ None
___ 1
___ 2-3
___ 4-5
___ More than 5
12. If you brought your family health history to your health care provider, which of the
following occurred? [check all that apply]
___ Discussion
___ Recommendation of specific lifestyle changes
___ Genetic testing
___ Medical testing other than genetic testing
___ Referral to a consultant [check all that apply]
___ Genetic Counselor
___ Medical Geneticist
___ Oncologist
___ Gastroenterologist
___ Cardiologist
___ Endocrinologist
___ Ophthalmologist
___ Other, please specify _______________________
___ Nothing, we didnt even discuss it
___ I did not bring my family health history to my health care provider
if not, why not? __________________________
13. Are you interested in having a genetics professional (a genetic counselor or
medical geneticist) review your family health history with you?
___ Yes
___ No
[If you answered yes, please provide your contact information:
______________________ ]
-3-

14. May a BWH Family History Project staff member contact you to discuss further
questions related to your participation in this project?
___ Yes
___ No
______________________ ]
15. Have you filled out the BWH Family History Project survey before?
___ Yes[ How many other times? ___ ]
___ No
16. What changed your mind, if the last time you filled out a survey you answered
NO to question 2, Did you complete the Surgeon General's "My Family
Health Portrait"?
___ Friends and co-workers described it as a positive experience
___ I was encouraged to participate by a family member
___ I am more trusting of the process now
___ Other, please explain ________________________
___ This doesnt apply to me
17. Have you heard of the Surgeon Generals Family History Initiative?
___ Yes
___ No (Go to 19)
18. If you answered yes to question 17, when did you first hear about the Surgeon
Generals Family History Initiative?
___ Before I heard about the BWH Family History Project
___ After I heard about the BWH Family History Project
19. Where did you first hear about the importance of collecting your familys health
history?
___ Television
___ Newspaper
___ Magazine
___ Health Professional
___ BWH Family History Project
___ Surgeon Generals Family History Initiative
THANK YOU FOR COMPLETING THIS SURVEY!

If you have questions please contact us at 617-525-4777 or
familyhistoryproject@partners.org.
If you would like to return your completed survey by interoffice mail, please send it to:
BWH Genetics Division
NRB 466E
-4-
2C2. Telephone Follow-up Interview of Participants
1. How did you hear about the BWH Family History Project (be as specific as possible)?
2. Did you complete your family history at home, at work, or both?
______Home
________Work ________Both
3. Did you enter information about any additional diseases [other than the standard six
diseases asked about for each family member on the Surgeon Generals website] for any
family members?
_____Yes
____No
4. Have you emailed your electronic family history to any of your family members?
______Yes
_____No
5. Did you use the paper version of My Family Health Portrait during any of your data
collection?
______ Yes
_____No
6. Do you have any thoughts on how to encourage BWHers to participate in the Family
History Project?
7. Do you have suggestions for getting BWHers to participate in our fall survey period?
8. Please rate your enthusiasm about bringing your family health history to your primary
care provider, with 1 being the least enthusiastic and 5 being the most enthusiastic (please
be honest!):
____ 1
____ 2
______ 3
______ 4
_______ 5
9. Using the same enthusiasm scale from 1-5 from the last question, with 1 being the least
enthusiastic and 5 being the most enthusiastic, please tell me how enthusiastic your health
care provider seemed to be about receiving your family health history:
____ 1
____ 2
______ 3
______ 4
_______ 5
10. If your health care provider ordered a test or made a referral for you after reviewing your
family health history, can you please share those specifics with me?
2C2. Telephone Follow-up Interview of Participants
Phone script for people who have received email notifying them that you would be calling:
Hello,
My name is Lauren Ryan, and Im calling to follow-up with you regarding the preliminary
Family History Project survey you completed in March. On that survey, you answered yes to
the question, May a BWH Family History Project staff member contact you to discuss further
questions related to your participation in this project?. You should have received an email from
the Family History Project on _________ informing you that I would be calling to ask you a few
follow-up questions about your participation in the Family History Project. This telephone call
should take between10 and 15 minutes. Is this a good time for you?
Phone script for cold calls(those employees for whom we do not have an email address):
Hello,
My name is Lauren Ryan, and Im calling to follow-up with you regarding the preliminary
Family History Project survey you completed in March. On that survey, you answered yes to
the question, May a BWH Family History Project staff member contact you to discuss further
questions related to your participation in this project?. I am calling to ask you a few follow-up
questions about your participation in the Family History Project. This telephone call should take
between10 and 15 minutes. Is this a good time for you?
Appendix 3C. Fall (Final) Participation Survey

November 2006
The Spring participation survey was subsequently modified to create the Fall survey,
which was distributed in November 2006. Surveys were again returned either
electronically, via one of our drop-off location sites, or handed directly to project staff
and volunteers.
Approximately three-quarters (73%) of Fall survey respondents were female and
26% were male, which is consistent with the gender distribution of BWH hospital
employees (74% female, 26% male). The reasons that majority of non-participating
employees reported not yet completing their family histories were either being
unaware of the project or a lack of time. Notably, one-quarter of employees (25%)
reported that they still planned to complete their family histories and very few (6%)
expressed concerns about privacy.
Over half of the project participants either learned something new about their
relatives health histories or shared something about their own health with a relative
(54% and 58%, respectively). While 55% of respondents kept the family history they
created to themselves, 21% shared the information with their health care provider.
For the 21% of employees who brought their completed family histories to their
health care providers, 61% estimated their providers interest as very high, 25%
received recommendations for specific lifestyle changes, 18% were referred to a
specialist (most often a cardiologist or gastroenterologist) and 33% reported that the
family history they brought with them to their appointment was not addressed.
Ninety-two percent of respondents reported that they would encourage others to
participate in the BWH FHP.
[1] Survey Instrument
..
..
..
..
..
3C1. Fall Participation Survey

Employee Participant FALL SURVEY
(it will take approximately five minutes to complete this survey)
Date of this survey __/__/__

Have you completed this survey previously? __ yes __ no
Age
Gender
___
___ Female
___ Male
Ethnicity or Race (check one or more)

___ American Indian or Alaska Native
___ Asian or Pacific Islander
___ Black or African American
___ Hispanic or Latino
___ White or European American
___ Other, please specify:____________________________
1. Which of the following describes your employment at BWH? (check one)
___ Management
___ Health care professional
___ Service
___ Administrative
___ Researcher
___ Not sure
___ Non-employee
2. Did you complete your family history using the Surgeon General's "My Family
Health Portrait"?
___ Yes ( please circle one: I completed it on line on paper )
___ No If no, please tell us why?
___ I still plan to do it
___ Never had time to complete
___ I was unaware of the project
___ I was concerned about privacy
___ I am separated from my family (e.g. adoption)
___ Other, please explain __________________
If you answered no to question #2 you may stop here (or go to
https://familyhistory.hhs.gov/ to participate now). Thank you for completing this
survey.
If you answered yes to question #2, please continue this survey.
-1-

3. If you previously returned a survey (e.g. our March 2006 survey) stating that you
had not completed your Family History, what changed since then? (check all
that apply)
___ Not Applicable
___ I have since learned more about the project
___ Friends or co-workers have described a positive experience
___ I was encouraged to participate by a family member
___ I am more trusting of the process now
___ New health concern
___ Other, please explain ______________________
4. Rate the strength of these motivating factors for you in completing your family
health history using the Surgeon Generals My Family Health Portrait, with 0
being the least motivating factor and 5 being the most motivating factor:
0 1 2 3 4 5
I thought it would be interesting
0 1 2 3 4 5
I thought it would be fun
0 1 2 3 4 5
I thought it could be beneficial to my health
0 1 2 3 4 5
I did it for the sake of a family member
if you had a family member in mind, was it
___ a parent
___ a child
___ other [relationship? ________ ]
0 1 2 3 4 5
I was encouraged by my co-workers or supervisors
Other motivation, please explain ______________________________
5. How many times have you returned to your family health history document to
add or change information? [circle one]
0
1
2-3
4-5
>5
6. Rate the difficulty of each task in completing your family health history, with 0
being the least difficult and 5 being the most difficult?
0 1 2 3 4 5
Discussing the subject with family members
0 1 2 3 4 5
Knowing what questions to ask my family members
0 1 2 3 4 5
Obtaining the health history information
0 1 2 3 4 5
Knowing where or how to enter information
0 1 2 3 4 5
Using the computer version of the history tool
7. Would you encourage others to participate in the BWH Family History Project?
___ Yes
___ No
8. Did you learn anything new about the health of your relatives in the process of
completing your family health history?
___ Yes
___ No
9. Did you share anything about your health with a relative in the process of
___ Yes
___ No
-2-

10. What did you do with the family health history portrait you created? (check all that
apply)
___ Kept it to myself
___ Shared it with my health care provider
___ Shared it with my family members
which family members did you share it with? [check all that apply]
___ a parent
___ a child
___ a cousin
___ other [relationship? __________]
___ Other, please explain ___________________________
11. How many relatives did you talk to in completing your family health history?
(check one)
___ None
___ 1
___ 2-3
___ 4-5
___ More than 5
12. As a result of your participation in the Family History Project, did you bring family
history information to your healthcare provider?
___ Yes
If yes, please estimate your providers interest, with 0 being the
least interested and 5 being the most interested: 0 1 2 3 4 5
___ No
If no, please tell us why: _______________________________
13. If you answered yes to #12, please check all of the following that occurred:
(check all that apply)
___ Discussion
___ Recommendation of specific lifestyle changes
___ Genetic testing
___ Medical testing other than genetic testing
___ Referral to a consultant [check all that apply]
___ Genetic Counselor
___ Medical Geneticist
___ Oncologist
___ Gastroenterologist
___ Cardiologist
___ Endocrinologist
___ Ophthalmologist
___ Other, please specify _______________________
___ Nothing, we did not even discuss it
14. Are you interested in having a genetics professional (a genetic counselor or
medical geneticist) review your family health history with you?
___ Yes
If yes, please provide your contact information: _________
___ No
-3-

15. May a BWH Family History Project staff member contact you to discuss further
questions related to your participation in this project?
___ Yes
___ No
______________________ ]
16. Have you heard of the Surgeon Generals Family History Initiative?
___ Yes
___ No (Go to 19)
17. If you answered yes to question 16, when did you first hear about the Surgeon
Generals Family History Initiative?
___ Before I heard about the BWH Family History Project
___ After I heard about the BWH Family History Project
18. Where did you first hear about the importance of collecting your familys health
history?
___ Television
___ Newspaper
___ Magazine
___ Health Professional
___ BWH Family History Project
___ Surgeon Generals Family History Initiative
THANK YOU FOR COMPLETING THIS SURVEY!

If you have questions please contact us at 617-525-4777 or
familyhistoryproject@partners.org or check out our websites
at: www.brighamandwomens.org/FamilyHistory and
www.bwhpikenotes.org/familyhistoryproject/introduction.asp
If you would like to return your completed survey by interoffice mail, please send it to:
BWH Genetics Division
NRB 466E
If you would like to return this by email, please attach it to an email and send to:
familyhistoryproject@partners.org
-4-
Appendix 4C. Website Visits and Page Views

The projects Senior Programmer worked with the NHGRIs Information Technology
staff to generate a listing of the number of visitors to the different project websites.
[1] Listing of Hits to My Family Health Portrait from Partners computers
[2] Listing of Hits to Brigham and Womens Hospital Family History Project
Internet Website
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4C1. Listing of Hits to "My Family Health Portrait" from Partners Computers
My Family Health Portrait

Logons from Partners Computers:
November 2005 - June 2007
http://familyhistory.hhs.gov
Month
Nov 05
Dec 05
Jan 06
Feb 06
Mar 06
Apr 06
May 06
Jun 06
Jul 06
Aug 06
Sep 06
Oct 06
Nov 06
Dec 06
Jan 07
Feb 07
Mar 07
Apr 07
May 07
Totals:
PARTNERS
visits
views
228
3,013
119
2,193
98
2,198
77
1,414
489
10,627
87
2,763
100
3,225
136
2,993
143
5,114
92
2,549
79
2,556
97
2,462
324
6,218
42
1,231
18
319
11
120
17
784
19
471
15
225
2,191
50,475
BIDMC
visits
views
42
122
61
398
22
62
58
178
51
352
51
224
31
96
49
185
33
87
41
89
33
80
35
140
60
154
25
67
59
239
40
165
19
29
48
81
48
160
806
2,908
Visit = A unique computer address

View = How many pages the computer address visited
BIDMC is a comparable academic medical center in Boston.
BIDMC did not have any specific program to engage employees
in the use of the US Surgeon General's web-based tool and
is shown here as a control for the basal activity that could be
expected for this time period at this kind of institution.
4C2. Listing of Hits to BWH FHP Internet Website
BWH FHP Webpage

Vistis to the Project Web Page
July 2006 - October 2006
Month
Jul 06
Aug 06
Sep 06
Oct 06
Nov 06
Dec 06
Jan 07
Feb 07
Mar 07
Apr 07
May 07
Jun 07
Jul 07
Aug 07
Sept 07
Oct 07
Totals:
New Vistors Total Visits

visits
visits
25
36
106
229
115
175
155
226
530
774
396
719
367
731
362
727
415
733
295
311
288
300
316
343
230
414
298
659
361
660
288
487
4,547
7,524
Appendix 5C. Feedback to My Family Health

Portrait Site
Data collection for the BWH FHP included feedback on the usability of the U.S.
Surgeon Generals My Family Health Portrait tool and the outcomes of bringing this
information to health care providers. Throughout the project, feedback was
continually generated on the usability of the U.S. Surgeon Generals My Family
Health Portrait tool and the outcomes of bringing this information to health care
providers.
This collection of data has not only allowed for continued improvement of the webbased tool, but it will also facilitate the understanding of what health care
consumers and providers need to start building a robust system for patient data
entry and health care provider-reviewed family health history information in an
electronic format.
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5C. Feedback to "My Family Health Portrait" Site

Feedback on My Family Health Portrait Web Based Tool
The employee users of the Surgeon Generals Web tool have been encouraged to communicate with
the project staff (via direct communication, email or telephone) with ideas regarding ways to improved
the usability of the site.
Listed below are a series of communications between our project team member (Peter Zumphe) and
the NHGRI usability group.
1). Add a primary key field

Category: Enhancement request
Rationale: Will be needed to facilitate bi-directional transferring and updating of data stored in the
patient's electronic medical record should the patient chose to do so. It is also useful meta-data to
indicate the number of problems that users encounter and the order in which relatives are entered and the
number of times users need to delete and start again. This information can be used to enhance the
intuition users have in entering data.
Comment: Can then also tell how often relatives have needed to be deleted and re-entered.
Resolution: Pending - discussed with Lynn Baumeister
2). Inclusion of an automated email option

Rationale: While there is reference to sending a file with the proband re-defined to another relative(s),
some mention should be made as to how right-clicking on the stored file can be used to email the file
using the "send to" option, at least on the Microsoft platforms.
Comment: This is probably difficult to accomplish with html programs on differing platforms.
Resolution: Discussed with Lynn Baumeister
3). Inclusion of a Patient Current Questions Fields

Rationale: Since it is often recommended that patients bring a list of their questions with them to their
provider, it would seem natural to attempt to use this as an additional incentive for patients to include this
as part of their family history. The more incentives we can tag to the family history program the better

Comment: Can use the same field structure as the "other diseases field"
Synonyms:
x
x
x
x
Problem list
Chief complaint
Past diseases and concerns
Current anxieties about future heath concerns
Outcome: Pending - proposed to Lynn Baumeister
4). Save_info Screen

Rationale: The process seems to not have any options so why not just have the script run.
Outcome: Discussed at length with Lynn Baumeister, will need to present again.
5). Eliminate Prominence of Delete Relative controls (1426)

Rationale:
x These controls are way too prominent - as though deleting is the most often used functionality
x Recommend replacing 'delete' with 'edit'
Resolution: pending
x Discussed with Lynn Baumeister
x In progress
6). Apply HL7 field naming conventions

Rationale:
x Will enhance future interoperability and inclusion into electronic medical records
x Facilitate normalization of the data
x Easier integration into current and future data schema
Outcome: Not submitted

7). Inclusion of an Hypothetical Pedigree
Rationale:
x
x
x
x
x
x
x
x
Sample pedigree displaying both common and uncommon entries.

Model for participants to use
Participants can call it up to see how to enter information
Twins
Known family genetic syndromes
Half brother and sisters
Other diseases
How to make corrections section after initial submission to pcp
Resolution: Pending - discussed briefly with Lynn Baumeister
8). Inclusion of Patient Med list

Rationale
x Will confirm / suggest existence of other related conditions
x Another incentive for the patient to complete before visiting a clinician
Resolution: Pending - discussed briefly with Lynn Baumeister
9). Screen enhancements

Rationale:
x Non-Scrolling screens and frames - i.e. entire frame fits on screen
x Any control buttons in a frame should always be visible without scrolling
x Reduce the prominence of the 'Delete relative' button caption and/or change caption to 'Edit'
Resolution Pending - discussed with Lynn Baumeister
10). Last_update field

Rationale: Emphasize for the clinician that new or changed data is present.
Outcome: Initial proposal
11). Leaving edits to save family history

Rationale:
Currently need to page through each person unless you know to click on the bottom most person in the
family.
Resolution: pending
x Discussed with Lynn Baumeister
x Already under discussion - in process
Comments:
Add a finished editing button
12). Save File To: - Help Topic(1460)

Rationale:
x Adoption of more explicit recommendations for storing/retrieving the local file
Outcome: Pending - discussed with Lynn Baumeister
13). Expanded goal and functionality explanation

Rationale:
x Will help prompt /elicit critiques on topics particularly from users involved in health care.
x Brief references to more topics more likely to 'snag' someone's interest or 'hot button'
Resolution: Pending submission
14). Relaying other disease info on chart

Rationale: Currently it is possible to highlight one standard or non-standard disease within a pedigree
chart. Would it be possible to add one or more non-standard diagnoses to the pedigree chart.
Resolution:
x Pending submission
x First mentioned on 2/21/2006
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Appendix 6C. Single Question Survey

Since there was no direct measure of participation during this project, we elected to
get a final estimate of participation based on a single question survey.
The question of Have you spent time in the last year gathering and/or organizing
any aspect of your Family Health History? was widely distributed to 12,767 BWH
employees via a single all user email on November 8, 2006.
Employees could respond by clicking yes, no or I will prior to November 30th and
then hitting submit.
During the survey period [11-08 to 12-07-06] we received 1324 responses (10.5%
response rate). Thirty six percent (N=482) said that they had performed Family
History work during the project, and 61% (N=818) said that they had not. An
additional 3% (N=43) said that they had not yet, but would prior to the end of the
month. Those who responded in this manner had the option to then click
immediately to the U.S. Surgeon Generals site if they wished. A follow up on this
group in January 2007 showed that 39% went on to complete family history
gathering as they planned in that time interval while 61% still had not participated.
A paper version of this same ballot was distributed to approximately 100 employees
who did not have email access as part of their jobs. In this sample 50% said that
they had participated in family history gathering. This 50% participation, while
reassuring that we had reached across the digital divide with these particular
employees, was a likely overestimate of participation by non-email using employees
since the 100 surveyed were in previously identified groups in whom there had been
project outreach.
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6C. Single Question Survey
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D. Additional Project Materials

Appendix 1D. 2005 Proposal to NHGRI-ECIB
Principal Investigator Michael F. Murray, MD submitted this proposal for An
Employee-Based Family History Project within a Large Urban Hospital to the
NHGRI-ECIB in August 2005 in response to the RFP Demonstration Project on the
Integration of Family History and Genomics Education Materials and Resources into
Communities. This proposal was granted the solitary contract awarded in 2005 for
this RFP, and work began immediately on the Brigham and Womens Hospital
Family History Project.
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Principal Investigator/Program Director :
Murray, Michael F.
A. Specific Aims
Employees of hospitals comprise over 3.5% of the U.S workforce, and more than 1% of the total U.S.
population. The employees at each of the 5,764 U.S. hospitals thus constitute a health care
community. We propose to employ a single hospital community as a pilot site for evaluating the
dissemination and use of Family History and Genomics Educational Materials. The rationale for
choosing this type of community includes: (1) hospital employees are an educationally, ethnically,
and economically diverse workforce; (2) engaging the professional staff (who will be both users and
providers in this model) as early adopters will accelerate the widespread implementation of these
tools; (3) successful use of these materials by hospital employees can be subsequently scaled-up
and applied to available patient populations at the same institution using the established educational
and technological infrastructure; and (4) once established, a working model can be exported to
hospitals and other healthcare institutions throughout the U.S. It should be noted that hospitals will
become natural allies in efforts to expand the use of the Family History tool. As employers, they
have a significant stake in the health of their employees. As providers, they serve to improve the
health of the greater community. And as institutions, they are interested in advancing the integration
of important health care information.
We propose to create a model program that will support the use of the U.S. Surgeon Generals My
Family Health Portrait tool within the employee community of a large urban hospital. Brigham and
Womens Hospital (BWH) is a 735 bed hospital and a major academic medical center and teaching
affiliate of Harvard Medical School. It is also part of Partners Healthcare, a comprehensive
healthcare system that includes 6 hospitals and an extensive outpatient network. BWH employs
11,941 people, including 4,000 doctors and nurses and 7,000 employees who constitute the
administrative, service and management staff. As such, the employees of BWH constitute an ideal
community in which to test the effectiveness of focused efforts to obtain voluntary participation in a
family history gathering initiative using My Family Health Portrait.
To this end, we will undertake three Specific Aims:
Specific Aim 1.
To provide extensive educational support and to make available the necessary

tools to all hospital employees who can then make a voluntary decision to
participate in the Family History Project.
Specific Aim 2.
To identify the obstacles to participation.
Specific Aim 3.
To evaluate feedback strategies for both users and providers.
Following this demonstration project, the key findings will be presented at national meetings. In the
most ideal circumstance, this project, denoted the Family History Project or FHP, has the potential to
lead to the development of new principles for obtaining high quality family history information that can
then be deployed at other hospitals throughout the U.S.
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Murray, Michael F.
B. Background and Significance

1. The Hospital as a health care community
Hospitals are obviously a crucial component of the healthcare delivery system. In addition, it should
not be overlooked that hospitals are also the place of employment for 5.3 million Americans1.
According to the U.S. Bureau of Labor Statistics, the Health Services Sector was the largest U.S.
industry in 2002; health services provided 12.9 million jobs. Within this employment sector, hospitals
constitute only 2 percent of the work establishments, but they employ 41 percent of all workers. The
workforce of each of the nations 5,764 hospitals2 can be defined as a health care community,
composed of consumers and providers.
Hospital employees are a diverse group of Americans, and they perform a range of occupations
within hospitals. The educational requirements alone for hospital employment range from little or no
specialized education for certain service occupations to college and professional school for some
professional level jobs. Among the service occupation workers are nursing aides, building cleaning
workers, and food service employees. The United States Bureau of Labor Statistics categorizes
hospital employees as shown in Table 1.
Hospital Occupational
Category
Management
Professionals
Service
Administrative Support
Percentage of
Workforce
4.8%
43.5%
31.4%
18.0%
Table 1. Occupational Categories within Hospitals1

The Healthcare sector of the American workforce is unique in that while all its employees are
themselves healthcare consumers, the professional staff have roles as both consumers and
providers of healthcare. This gives the professional staff within healthcare institutions a high level of
social connectivity which positions them to assist in the rapid dissemination of new ideas and
practices3.
The ultimate success of a broad-based voluntary public health undertaking such as the U.S. Surgeon
Generals Family History Initiative will be enhanced by demonstrating its use within the employee
base of a hospital for several reasons. First, the diversity of the workforce allows for an opportunity to
examine the barriers to uptake across a range of racial, ethnic, economic, and educational strata.
Second, the 30-40% of employees who are also healthcare providers will be amongst the first to
become educated in the process (from their consumer perspective), and they can then become allies
and advocates in efforts to engage their patients. Lastly, an established demonstration model that
involves hospital employees can in principle be exported and repeated within healthcare institutions in
every community in the nation.
2. BWH as community for the Family History Project
a. Brigham and Womens Hospital
BWH (http://www.brighamandwomens.org/) is located within the city of Boston, and is the citys
second largest employer. Metropolitan Boston has a population of approximately 575,000 people.
The major industries are health care, financial services, insurance, and higher education. Like
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Murray, Michael F.
Washington, D.C. and San Francisco, the city of Boston employs more people than it has residents,
and an estimated 61% of the Citys employees live outside of the city limits.
BWH is a 735-bed hospital in Boston, a major academic medical center and a teaching affiliate of
Harvard Medical School. BWH employs 11,941 people, approximately 4,000 of these employees
being doctors and nurses with other 7,000 employees comprising predominantly administrative,
service and management staff. Despite the fact that a single institution is proposed in this
demonstration project, there is a need for online and distance learning materials. A longstanding
problem of scarce available real estate adjacent to the hospital campus has over the years created a
situation where a significant portion of the employees work off the hospital campus at more than a
dozen sites throughout Boston and its near suburbs. Effective participation from this portion of the
workforce will almost exclusively require electronic access and support.
b. Resources available
BWH Healthcare and Research Infrastructure
Each year BWH provides care for approximately 41,000 inpatients, and 754,000 outpatients. More
than 28,500 surgical procedures are performed annually, and the Emergency Department has 54,000
visits. As New England's largest birthing center more than 9,900 babies are born at BWH. BWH is
internationally known for its treatment of complex disorders in clinical areas such as cardiac care,
cancer treatment, neurosciences, orthopedics and arthritis, and women's health, as well as offering
outstanding primary care services.
BWH is home to a large and complex biomedical research enterprise. There are over 500 scientists
and $240 million in research grants dedicated to exploring questions of basic and clinical science.
There is research interest and expertise on genetic contributions to disease in the areas of
Cardiovascular Disease, Breast Cancer, Colorectal Cancer, Diabetes, Stroke, Asthma, Osteoporosis
and Renal Disease. In addition, there is an active Primary Care research group (led by Dr. David
Bates) whose focus includes the optimal use of electronic medical data.
BWH Information Technology Infrastructure
BWH has three electronic tools that are relevant to this project, each of which can be further adapted
to assist in the overall efforts of the institutions Family History Project. First, the Partners Patient
Gateway (http://www.patientgateway.org/) is a patient initiated electronic tool for access to
physicians, physicians offices and to the patients medical record. As part of an ongoing ACHRQ
grant to the Primary Care Research Group, a Family History Tool is coming on line as part of this
electronic resource later this year to give primary care physicians decision support information in six
target disease categories (cardiovascular disease, diabetes, colon cancer, breast cancer,
osteoporosis, and glaucoma). However, this non-pedigree tool does not lend itself as well as
Surgeon Generals family history tool to procuring a detailed high quality family history. It is, however,
well suited to integration with the second resource, the BWH electronic Longitudinal Medical Record
(LMR) that is maintained for each BWH patient. Although beyond the immediate scope of this
proposal, the Patient Gateway expertise is well suited to the goal of seeing the eventual integration of
the Surgeon Generals family history tool into the LMR. This would be a natural off-shoot of the
project proposed here, since a significant number of BWH employees also receive their primary care
at BWH. Lastly, BWH GENE TALK is an internet site under development by the PI to support a
health professional distance-learning program, which has recently been piloted in July and August,
2005. It will be presented at a national meeting being organized by Dr. Bruce Korf for Sept., 2005,
and this site will host a special area for the FHP.
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Murray, Michael F.
BWH ELSI Infrastructure

Two distinct entities are available to this project for ongoing consultative input and advice: the
Partners Institutional Review Board (IRB) and the Center for Bioethics. The key personnel on this
proposal include individuals representing both of these entities: Ms. Heather Ferguson, M.S., C.G.C.
is a member of the IRB, and Lisa Lehmann, M.D. is the Director for the Center for Bioethics. IRB
input will be specifically sought in regards to an appropriate informed consent procedure for this
project, as well as other issues related to the protection of human subjects. In addition, ongoing
counsel from Dr. Lehmanns Center will be sought particularly regarding clear definition of the
appropriate roles for the employers and supervisors in this project.
BWH Institutional Support
It is important to note that there is considerable enthusiasm and support for a Family History Project
of this nature at BWH. Evidence for this includes the accompanying letter of support from BWH
President Gary Gottlieb, M.D., M.B.A., and the willingness of our research administration to waive the
standard NIH indirect costs given this proposals small budget. In addition, the BWH Biomedical
Research Institute will potentially provide funding (maximum $120K) for the extension of this FHP
initiative that would involve the integration of the Surgeon Generals family history tool into the BWH
LMR, for those employee-patients who might voluntarily elect this option were it available. We are
thus excited that there is extremely strong support from BWH for the NHGRI Family History Project.
3. Demographics of the target community
The demographics of the BWH Employee population reflect diversity in terms of ethnicity, gender,
age, and geographical domicile. In particular, the ethnic composition of the complete BWH employee
population is provided in Table 2. This breakdown is similar but not identical to that in the Boston
metropolitan area, which is 54.5% White, 25.3% Black or African American, 7.5% Asian American,
0.40% American Indian with 14.4% Hispanic or Latino (of any race). One corollary of this modest
disparity is that a significant number of BWH employees do not reside in the Boston metropolitan
area, but rather live in areas outside the city, Table 3. For the purposes of this project,
Table 2. All BWH employees, by ethnicity
Ethnicity
Total No.
% Total
American Indian
18
0.15
Asian / Pacific Islander
891
7.46
Black
1923
16.10
Hispanic
885
7.41
White
7798
65.30
Not Available
425
3.56
Total No. Employees
11941
100%
Table 3. All BWH employees, by domicile

Location
Total No.
% Total
Metropolitan Boston
3974
33.28
Massachusetts (non-Bos.)
7612
63.75
Outside MA
355
2.97
Total No. Employees
11941
100
Source: BWH Human Resources
Source: BWH Human Resources
however, we regard this as a strength, because it can well be argued that the composition of a
geographically defined target community of similar size to that proposed here for the demonstration
project (e.g. a small town) may well be more ethnically homogeneous and less diverse than the BWH
employee population described here.
In addition, the latest ethnic breakdown for BWH employees by profession, as summarized in the
2004 EEOC Report, Table 4. The most obvious skewing in this breakdown is the underrepresentation of minority employees among the professional employee group, for both male and
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Murray, Michael F.
female genders. Conversely, minority groups are overly represented amongst service workers and
office and clerical staff. Please note that the number of BWH employees listed in Table 4 (9149) is
significantly less than that listed in the other Tables shown in this section (11941). This is because
the EEOC only requests employee information for weekly paid employees, and the difference (~2800
employees) reflects many professional staff who are paid on a monthly basis.
Table 4. Ethnicity by job category (Source: 2004 BWH Report to the EEOC).
Table 5. All BWH employees, by age

Age Range
Total No.
% Total
14-20
265
2.22
20-29
2638
22.09
30-39
3260
27.30
40-49
3041
25.47
50-59
2100
17.59
60-69
564
4.72
70-79
66
0.55
80-86
6
0.05
Total No. Employees
11941
100%
Table 6. All BWH employees,

by gender
Female
8845
Male
3094
Unknown
1
Source for Tables 5 and 6:
BWH Human Resouces
Lastly, the BWH employee population is also diverse in terms of employee age, and although it
deviates significantly from 50:50, by gender, Tables 5, 6. In sum, the demographics described above
may not mirror the composition likely to be encountered in any particular geographically defined
community. However, what is abundantly clear is that the BWH employee population comprises a
highly diverse community that also offers several significant and potentially powerful advantages for
this project in terms of its size, diversity and mix of users and providers.
4. Significance
In the future, the ability to diagnose and treat debilitating disease, and to anticipate an individuals
potential to develop disease, will be enabled by knowing his or her genetic make up. As a first step
towards implementing this goal at the community level, we propose to develop a systematic approach
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Murray, Michael F.
to obtain, on a voluntary basis, detailed family histories from the 11,000 BWH employees that
comprise the extended Brigham community. This health care community is socio-economically
diverse and enjoins an employee population that contains both a concentrated workforce component
at BWH, and a dispersed component at various BWH affiliates. As such, it will test several key
aspects of family history gathering that are likely to arise in any community, including compliance,
confidentiality, communication, logistics and interaction with providers.
In addition, however, use of the hospital as an initial nucleation point for gathering family history data
constitutes a novel model that if successful, has the potential to be extended to other hospitals in the
Partners Healthcare System (http://www.partners.org/), and throughout the U.S.
C. Project Plan: Engaging the Community in the Family History Project

In planning this project, we have sought to divide the task into 4 discrete, sequential phases. We
have arbitrarily termed these: (1) the Pre-launch preparation phase, (2) the Pre-launch publicity and
education phase, (3) the Launch and Implementation phase, and (4) the Evaluation phase. Below,
we describe the key components and plan for each of these 4 phases
It is important to note that Thanksgiving Day, Thursday, November 24, 2005, has been designated as
National Family History Day. Thus, this FHP will be organized to start as soon as a funding decision
is made (Aug. 24, 2005). This timing will permit the FHP to take advantage of the increasing national
publicity that attends National Family History Day. Nonetheless, we wish to emphasize that while a
major burst of activity will occur during the Fall, the FHP will extend throughout the year, from Sept.
15, 2005 to Aug. 31, 2006, as stipulated by the NHGRI RFP.
1. Pre-launch preparation phase
a. IRB approval
There are several pre-launch preparation phase tasks of immediate importance that must be
completed to maintain this timeline. The first of is the timely submission of a protocol to the Partners
IRB for approval. Two major issues that need to be addressed include the provisions for
confidentiality, especially given the proposed use of the on-line version of My Family Health Portrait,
and also for the informed, voluntary consent of the employee population. Ms. Heather Ferguson,
M.S. , C.G.C., one of the Key Personnel on this proposal, is a member of the Partners IRB. We have
contacted Jonathan Alpert, M.D. of the IRB to discuss these matters, and have been assured that the
IRB is, in principle, highly supportive of this endeavor. Therefore, we do not anticipate any problems
securing IRB approval.
b. Print materials for distribution
Initial visibility for the FHP amongst BWH employees will be generated by: (i) a brochure mailed to all
11,000 BWH employees, (ii) posters in the BWH Lobby (75 Francis St.), BWH Cafeteria (level 2),
Ambulatory Lobby (45 Francis St.) and the PBBH Lobby (15 Francis St.); (iii) articles in the main
BWH internal publications (Pike Notes and the BWH Bulletin). Peter Brown, BWH Vice President of
Public Affairs and Communications, has pledged his full support for help with these matters.
Since the idea of large scale family history ascertainment can create anxiety about the use of such
information, the mailed brochure in particular will serve not only as a public relations vehicle but will
also provide the opportunity to address potential concerns about confidentiality. In addition, the
Working Group will hold a focus group meeting with BWH employees in September to identify other
potential concerns with the Project. This input will be used to inform the content and design of the
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Murray, Michael F.
brochure. In particular, the brochure will be available in both English and Spanish and will address
concerns about privacy. It will also address the potential importance of the Family History as an
increasingly important public health tool in the future.
c. Establishing family history focused BWH websites
The rationale for providing a printed brochure to all employees relates in part to the fact that, just as in
any community, a significant percentage of the BWH employee community may not be adept at
accessing computer based information or e-mail broadcasts. On the other hand, these latter media
are extraordinarily efficient vehicles for disseminating information, and we do anticipate that a large
fraction of our employee base is computer literate. This same issue will arise later when we discuss
paper versus web-based use of the My Family Health Portrait family history tool. Therefore, two
websites will be developed as part of this project.
The first website will be the My Family Story Intranet Site. This will be a project specific site within
the BWH intranet that will be easily accessible to interested employees. It will include weblinks and
downloadable materials related to the task of completing ones family history. There will be patient
stories about why family history is important and how to obtain the information from relatives. There
will also be elements of the site that will make it worth re-visiting, such as updates, trivia questions
and learning opportunities. Once the project is underway, we will encourage participants to share
interesting, funny, and important stories about their experiences in pursuing their family history. A
selection from these stories will be made available to other employees after all privacy concerns are
addressed. While this will be anecdotal, we believe it will also be instructive. Permission will be
sought to eventually make some of these stories part of the educational materials that we will deliver
as part of our final project product.
This site will initially launch with prototype case histories and supportive educational materials.
However, we plan to have the participants make the case for Why Family History Is An Important
And Useful Tool In Health Care? and How To Engage Ones Family To Collect Appropriate Family
History Information? with their own stories. Lastly, there will be mechanisms to communicate with
the project staff to ask for assistance or to provide feedback.
The second website that will support this project is the BWH GENE TALK Internet site, already
under development by the P.I. in collaboration with the BWH Telemedicine Group. This site is
intended support a health professional distance-learning program, and a Family History portion of
the site will be added for both internal and external users. This site will include resources such as the
Multilingual Family History materials described below.
d. NHGRI planning document

The NHGRI RFP requests a planning document, outlining who will be involved in the demonstration
project, and how that is due one month after the contract is awarded (i.e. Sept. 24, 2005). We have
already identified several Key Personnel for this project. The month long interval between the
contract award date and the due date will allow us to further refine our plans and to identify additional
personnel who will play key roles in this project. The NHGRI planning document will provide both
FHP project personnel and NHGRI program staff with a milestone to ensure that the above
mentioned preparatory requirements are on track.
2. Pre-launch publicity and education phase
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Murray, Michael F.
a. Development of patient materials

Development of a Multilingual Family History Resource Library
BWH has a workforce that speaks many languages. While most employees speak English, some
members of their families may not be bilingual, and some employees capacity to understand written
English may be limited. While addressing our employees needs for Family History Tools in
languages other than English, we will create a multilingual family history resource library that will
eventually be posted along with other resource material as part of the Family History portion of the
BWH GENE TALK internet site. Given our employee demographics we anticipate that at a
minimum there will be requests to develop specific educational materials in Spanish (to supplement
the Surgeon Generals information), Haitian Creole, Kriolu (or Cape Verdean Creole), Polish,
Russian, and Portuguese. Through a collaborative effort between Dr. Cynthia Morton (a key
collaborator on this Project) and Peter Zhang, an M.D., Ph.D. student in Medical Genetics at Peking
Union Medical College in Beijing, a Chinese language version of My Family Health Portrait has
already been created for posting on a popular Chinese web site; we plan to add this material to our
resource library.
BWH Interpreter Services
As a large urban healthcare institution, the hospital has an active interpreter services group who are
committed to clearly and thoroughly communicating with any patient and their family who needs
assistance. In addition, we will engage the BWH interpreter services to professionally translate
printed materials as needed for all interested employees. We will also askemployees who translate
materials for their own families to submit copies of any written or electronic translations of materials to
us for review, and to potentially include in our online multilingual resource library.
b. Development of Materials for Health Care Providers
The provider as user
Our strategy includes a plan to engage every provider at BWH first as a User. This will give those
providers direct knowledge of the educational materials available to users, and the potential
difficulties involved in being a participant in the demonstration project. We also hope that our
providers will give us useful feedback regarding how to improve the educational and operational tools.
To target faculty, presentations will be made at faculty meetings for different BWH Departments (just
one way in which this RFP is pan-Departmental) that will serve the purpose of making providers
aware of the initiative in their capacities as both employees and providers.
BWH Electronic Medical Record Decision Support
An ongoing ACHRQ study at BWH has supported the creation of a family history feature within the
electronic medical record. This feature allows for non-pedigree based family history data entry, and
will provide specific decision support data to providers based on a series of high risk markers in the
areas of cardiovascular disease, diabetes, colon cancer, breast cancer, osteoporosis and glaucoma.
It is our intention that this unique tool will also support providers in their assessment of patient specific
data acquired through this demonstration project. Moreover, since this Partners Gateway feature is
modifiable, we expect that this tool will evolve based on findings and recommendations that emerge
from this project.
3. Launch and Implementation Phase
a. Engagement of users
All 11,941 BWH employees will be invited to participate according to the participation algorithm
summarized in Figure 1. As described below, there will be ongoing electronic and non-electronic
outreach throughout the project period from October 1 to August 1, 2006. The electronic component
Page
27
Murray, Michael F.
will involve group e-mails that provide links, make announcements and report progress throughout
this period.
All BWH
Employees
Employees who choose
not to participate
These employees will

be asked to complete a
simple questionaire on
reasons for declining to
participate
Employees who
choose to participate
Users who choose

paper participation
Users who choose

electronic participation
Option given to enter

electronically (access
and assistance as
needed)
A subset will have the

option to complete and
review with Project
Staff
Complete and Keep

Private
Complete and Forward

to Physician
Figure 1. Employee Participation Algorithm. This completely voluntary program for hospital
employees will allow for the option of declining participation in both the program and in any surveys.
Translation services and assistance with using the tool will be provided to all interested employees.
Review with the professional staff of the project (i.e. a medical geneticist or genetic counselor) will
be offered to a subset of interested employees; a minimum sample of 100 self-identified interested
persons will be engaged in this manner. Surveys of users and non-users will seek to assess
reasons for decisions made by employees and barriers to participation.
The non-electronic component will involve two family history kiosks that will be located at different
sites around the hospital at various times during the project, including the main lobby, the cafeteria,
and outside the main parking facility. In addition, paper informational brochures will be distributed to
employees. Project staff will also present information about the project to any employee groups that
are interested in hearing more about the project (e.g. labor union meetings, new employee training
sessions). Since all new BWH employees must visit Occupational Health for mandatory TB testing,
the option of participating in My Family Health Portrait will be offered on a voluntary basis at this site,
thus maintaining an up to date employee list.
One kiosk will include a centrally placed work area (table and banner) outside the BWH cafeteria that
will be staffed to coincide with meals and cover all three shifts. Interested employees can register to
participate in the FHP and will be given the option of whether they wish to fill out their Family Histories
at home or on site, using the paper or on-line versions of the U.S. Surgeon Generals My Family
Page
28
Murray, Michael F.
Health Portrait, available in both English and Spanish versions. We will have the electronic version
of the tool installed and available on every computer workstation in the hospital. We will also
distribute paper copies of the tool in English and Spanish. Project staff, including an on site genetic
counselor, will be available to assist individual employees who elect to enter their family history data
on-site, be it on paper or electronically. Participants may voluntarily elect to have their family history
reviewed by a genetic counselor or medical geneticist, prior to forwarding to their primary care
provider, which again, will be done on a purely voluntary basis.
b. Engagement of BWH and external providers
As indicated elsewhere, providers will first be engaged to participate as users. There will also be
provider-specific outreach to promote participation. This electronic interface will involve the
transmission of provider group-specific e-mails, with project staff responding to electronic queries. In
addition, focus group meetings to address provider concerns will take place as needed, and
presentations to provider meetings and clinical conferences will be offered by project staff.
Importantly, we recognize that many of the hospital employees receive some or all of their healthcare
outside of BWH. All of the employees do have a medical record generated by BWH occupational
health, but we know that the key parameter for this project will be where they receive their primary
care. We will develop a support apparatus for outside healthcare providers that will give login access
to obtain information on the family history tool, the educational support materials, and the decision
support information that is available through the BWH internal electronic medical record. This login
system will allow us the opportunity to begin a dialogue with these providers on how information is
being generated, transmitted to them and utilized by them. There will be no breach of patient
confidentiality in these exchanges since there will be no discussion or recording of patient specific
medical information. This dialogue will be exclusively aimed at feedback on the project, systems
evaluation and educational support for providers.
Other Educational Materials
Available resources regarding family history in healthcare are now widely available to both physicians
and patients over the internet (a number of websites currently list useful links, including NHGRIs
http://www.genome.gov/11510372). Much of the recent increase in available information is due to the
efforts of many professional organizations including the National Society of Genetic Counselors
(NSGC)4, the American Society of Human Genetics (ASHG)5, the American Academy of Family
Practitioners (AAFP)6, the American Medical Association (AMA)7 and the Center for Disease Control
(CDC)8. The information included on these sites includes: instructions for recording a family history,
pedigree templates, medical and family history checklists, and brochures emphasizing the importance
of family history. All of the information from these sources can be downloaded and printed. In
addition, there are websites dedicated to specific disorders such as the American Heart Associations
(AHA) site9 that provides specialized information and an interactive family history tool called The
Heart of Diabetes. For the purposes of this project, these resources will be used to supplement the
U.S. Surgeon Generals family history tool. Specifically, the weblinks will be made available through
our intranet and internet sites, and printed versions of the information will be offered to those that
choose paper participation.
Copies of the National Coalition for Health Professional Education in Genetics (NCHPEG) CD-ROM
entitled Genetics and Common Disorders: Implications for Primary Care and Public Health
Providers10 will be requested from NCHPEG to be made available to local providers who are
interested in receiving a copy. Furthermore, if a patient or physician makes a specific request for
information pertaining to a family history of a particular disease, all efforts will be made to provide upto-date and reliable online and/or written information.
Page
29
Murray, Michael F.
4. Evaluation Phase
a. Health Decision Support Trial Period
In May 2006 we plan to launch an expanded decision support initiative for both users and providers.
This expanded initiative will come 5-6 months after the demonstration project is launched, and will
benefit from the analysis of data collected during that initial phase. We anticipate that this expanded
initiative will include specific advice for users on what kinds of further data should be obtained and
questions to discuss with your primary care provider. For providers, decision support on an
expanded number of high risk conditions (in addition to the six available at the start of the project)
as well as decision support for cases of individuals who have an increased risk for target diseases
(e.g., a single first degree relative with early onset disease). The process for generating the
messages in this expanded decision support initiative is outlined below.
b. Surveys
We will be surveying all employees to assess obstacles to participation. We will periodically review
this data and alter methodologies to encourage the maximum user engagement. Providers will also
be surveyed regarding satisfaction and suggestions for improvement. We also anticipate having
periodic face-to-face meetings with interested user and provider groups. A steering committee
composed of the grants key personnel and others (including non-provider users) will be assembled
to periodically review survey data and adjust practices.
c. Outcomes Reporting
In this voluntary demonstration project we will not formally attempt to track all outcomes and health
interventions that are prompted by this work. However, we will have a self reporting system using
unique identifiers in which patients and providers can report on: (a) physician visits, (b) health
interventions, and (c) health outcomes. This pilot reporting system will give some data about the
nature and range of outcomes, and possibly about the statistical requirements needed to effectively
design future family history based studies.
d. Pedigree Analysis Reports

Three panels of three providers will be asked to periodically review instructive family pedigrees.
The panels (composed of primary care providers, medical geneticists, and genetic counselors) will
each review the same pedigrees, and then they will be asked to comment on what further information
is needed and what recommendations should be made.
e. Expanded Decision Support Initiative
A decision support committee will meet to formulate the content of the expanded decision support
messages for users and providers to be implemented starting in May, 2006. This committee will
formulate these messages based on: (1) survey and outcomes information, (2) review of published
literature and (3) recommendations made to this committee by the pedigree analysis panels. The
conclusions from this work will be presented nationally to promote the free flow of ideas, and to help
promote the development of a consensus regarding the future utility of family histories.
D. Timeline for Deliverables

1. Pre-launch Preparation [August 24 to November 1, 2005]
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30
1.
2.
3.
4.
Murray, Michael F.
IRB Approval
Planning Document to NHGRI [September 24 2005]
Creation of BWH My Family Story intranet site
Development of Family History Component of the BWH GENE TALK internet site
2. Pre-launch Publicity and Educational Campaign

[October 1 to November 14, 2005]
1. Electronic Communication sent to all email users, with specific emphasis on users at off
campus sites
2. Paper Communication via brochure and established hospital newsletters [e.g., Pike
Notes, BWH Nursing, and Medical Staff News]
3. BWH Town Hall Meeting the hospital has several Town Hall meetings per year that are
open to the entire workforce, and we will plan to have one such meeting to focus on this
project.
4. Employee Group Outreach we will offer to present information at the meetings of different
employee groups e.g., Labor Union Meetings, Medical Staff Meetings, Administrative
Departmental Meetings
5. Distribution of Have you heard your story? and Brigham Family History Project buttons
to employees to wear on their clothing (e.g., white clinical coats)
3. Launch Day pre-Thanksgiving Day [November 14, 2005]
1. Family History Tool and accompanying educational packet available on all hospital
computer workstation desktops
2. Lobby and Cafeteria Displays
4. Demonstration Project [November 14 to August 31, 2006]
1. Initial Demonstration and Data Collection Period [November 14 to April 30, 2006]
2. Continued Demonstration, Data Collection and Expanded Health Decision Support Trial
Period [May 1 to August 31, 2006]
5. Final Evaluation Report and Project Product Demonstration
[September 1, 2006]
6. Ongoing Commitment to Dissemination of the Model
1. The BWH GENE TALK internet site
2. Presentations at national meetings
3. Publications
7. Future Follow up to the Demonstration Project (contingent on future funding)
1. Scale up family history demonstration to incrementally larger segments of the BWH patient
population
2. Export employee-based Family History Project to other hospitals and healthcare
institutions, and in our Partners Healthcare Network.
E. Literature Cited
1. US Bureau of labor statistics website: (http://www.bls.gov/oco/cg/cgs035.htm)
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31
Murray, Michael F.
2. Source: American Hospital Association website

(http://www.aha.org/aha/resource_center/index.html).
3. Scott, John P. Social Network Analysis: A Handbook. 2nd Ed. London: Sage Publications, 2000
4. Source National Society of Genetic Counselors website
(http://www.nsgc.org/consumer/familytree/index.asp)
5. Source American Society of Human Genetics website
(http://www.ashg.org/genetics/ashg/educ/007.shtml)
6. Source American Academy of Family Physicians website: (http://www.aafp.org/)
7. Source American Medical Association website: (http://www.ama-assn.org/)
8. Source Center for Disease Control website: (http://www.cdc.gov/node.do/id/0900f3ec8000e2b5)
9. Source American Heart Association website: (http://www.s2mw.com/aha/fht/index.aspx)
10. Source Genetics & Common Disorders: Implications for Primary Care and Public Health Providers
CD-ROM developed by NCHPEG (2005).
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32
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Appendix 2D. Sub-study: Self-referral of Adult

Patients for Genetic Consultation
An important sub-study of the BWH FHP was undertaken during the project year.
The objective was to study the patterns and outcomes of self-referrals to genetics
professionals using the subset of BWH employees who requested a genetics
consultation to discuss the family health histories they created using My Family
Health Portrait. Employees could request an appointment with a genetics
professional in one of three ways: (1) a hyperlink posted on the FHPs intranet site
stated Request an appointment with a Geneticist and linked to the BWH FHP email
address for interested employees to electronically submit their request; (2)
employees were personally invited to meet with a geneticist by our staff and
volunteers at the BWH FHP kiosk, during employee group presentations, data entry
sessions, and during the New Employee Orientation weekly presentation; and (3)
one of the questions on the BWH FHP March survey asked employees if they were
interested in meeting with a geneticist to discuss their family health histories.
Individual consultations took place in the Interactive Center and consisted of a 20-30
minute session with the genetic counseling intern and either a certified genetic
counselor or medical geneticist. The sessions were structured to discuss the
participants family history, clarify the employees concerns, and give diseasespecific feedback and recommendations. There were 30 self-referrals from the pool
of approximately 13,000 BWH employees (0.2%). Participants who self-referred
universally sought to discuss diseases recorded in their family health history in an
effort to optimize their own healthcare or that of their close relatives. Employees cited
a variety of concerns prompting the Genetics consultation, including: single gene
disorders (35%), common complex diseases (91%), and other genetic concerns
(17%). Forty-seven percent of the sub-study participants reported that they had
previously discussed their family history concerns with their primary care provider
prior to the Genetics consultation.
The research conducted in the FHP sub-study was awarded a platform presentation
at the 2007 American College of Medical Genetics meeting held in Nashville,
Tennessee and was presented by Monica Giovanni, MS.
[1] Description of sub-study and findings
[2] Presentation by Monica Giovanni at the 2007 National Meeting of the
American College of Medical Genetics
..
..
..
..
..
2D1. Description of Sub-study and Findings

SELF-REFERRAL OF ADULT PATIENTS FOR GENETIC CONSULTATION
MA Giovanni, KJ Holbrook, MF Murray
Brigham and Womens Hospital, Boston, MA
ABSTRACT:
Hypothesis: The patterns of self-referral to genetics professionals and the outcome of
such visits in adult patients constitute an important data set that should be explored. This
information could illuminate how to most effectively position and utilize limited genetics
professionals within healthcare delivery systems in order to achieve the optimal care of
patients.
Study Design: A study of barrier-free patient self-referral to genetic professionals was
undertaken among the employee population of a major urban medical center in Boston,
Massachusetts. The study design removed specific barriers to the utilization of genetic
services including: [1] need for clearance from insurers, [2] need for authorization from
primary care providers, and [3] any financial disincentives since consultations were
offered free of charge. This study took place within the context of a yearlong effort to
support the voluntary use of a family health history tool among hospital employees. All
employees were offered the opportunity to discuss genetic concerns raised by their selfgathered history with a genetics professional. These consultations consisted of a 20-30
minute session with a genetic counseling intern and either a certified genetic counselor
or medical geneticist. The sessions were structured to discuss the participants family
history, clarify the patients concerns, and give disease-specific feedback and
recommendations.
Results: Over the 12-month period of the study, there were 30 self-referrals from a pool
of 13,000 hospital employees (0.2%) to whom the service was available. Participants
who self referred universally sought to discuss diseases recorded in their family health
history in an effort to optimize their own healthcare or that of their first-degree relatives.
Participants cited a variety of concerns prompting consultation, more than one in many
cases, including: single gene disorders (35% of patients), common complex diseases
(91%), and other genetic concerns (17%). Forty-seven percent of participants reported
that they had previously discussed their family history concerns with the primary care
provider prior to the genetics consultation.
Conclusion: The nature of the patient questions brought to geneticists in this study does
not suggest an over-utilization or misuse of genetic services associated with the removal
of the barriers to services. However, the optimal design for incorporating the consultative
services of genetic professionals within healthcare delivery systems will depend on
issues such as: [1] the effect of self-referral to geneticists on consumer satisfaction, [2]
the capacity of the genetics workforce to accommodate this kind of new demand, [3] the
relevant genetics expertise of other medical professionals (such as internal medicine
subspecialists), and [4] the impact of computer-based point of care decision support on
primary care-patient interactions on questions of genetic risk.
2D2. 2007 ACMG Presentation
Introduction
Self-Referral of Adult Patients
for Genetic Consultation
MA Giovanni, KJ Holbrook, MF Murray
Brigham and Womens Hospital,
Boston, MA
In recent years, insurance carriers have set up

barriers to the self-referral of patients to
specialists within the healthcare delivery system
Insurance providers often require that a patient gain a
referral to a genetics provider from a primary
physician in order to ensure coverage for the patient
visit
Individual patients who wish to self-refer are

often left to pay for the visit out of pocket
It has been previously hypothesized that these
barriers to services prevent the over-utilization
or misuse of genetics services
Study Hypothesis
Study Design
The patterns of self-referral to genetics

professionals and the outcome of such
visits in adult patients constitute an
important data set that should be explored
A study of barrier-free patient self-referral

to genetic professionals
By removing the barriers to services, the

patterns of self-referral can be
documented
Study Design
All employees were encouraged to record
their family health history
Employees were then offered the
opportunity to discuss genetic concerns
raised by their self-gathered history with a
genetics professional
Study Population: the employee population

of a major urban medical center in Boston,
Massachusetts.
This study took place within the context of

a yearlong employee family history
project
Study Design
The study design removed specific
barriers to the utilization of genetic
services including:
1. The need for clearance from insurers
2. The need for authorization from primary care
providers
3. Any financial disincentives
http://www.hhs.gov/familyhistory/
The Genetics Consultation

Consultations consisted of a 20-30 minute
session with a genetic counseling intern and
either a certified genetic counselor or medical
geneticist
Sessions were structured to discuss the
participants family history, clarify the patients
concerns, and give disease-specific feedback
and recommendations
Participants were advised of the genetic basis of
diagnosis, treatment, and prevention of disease
Results
Participants cited a variety of concerns
prompting consultation, more than one in many
cases, including:
35% of patients cited concern regarding a single gene
disorders
Hereditary breast, ovarian, and colon cancers
Hemoglobinopathies
91% of patients cited concern regarding common

complex diseases
Heart disease
Diabetes
17% of patients cited concern regarding other genetic

concerns
Genetic risk assessment
Results
41% (12/29) of patients reported that they
had previously discussed their family
history concerns with the primary care
provider prior to the genetics consultation
35% (10/29) of patients reported that they
were currently being monitored by their
PCP
14% (4/29) reported that this monitoring
was secondary to their family history
Results
Over the 12-month period of the study, there
were 29 self-referrals from a pool of 13,000
hospital employees (0.2%) to whom the service
was available
Participants who self referred universally sought
to discuss diseases recorded in their family
health history in an effort to optimize their own
healthcare or that of their first-degree relatives
Sessions consisted of discussion of diseases
with both Mendelian and non-Mendelian
inheritance patterns that were observed in these
families
Familial Cancer Syndromes

From the pool of 29 participants, 6 (21%)
met the criteria standards for further
genetic analysis based upon personal and
family histories
4 patients met the BRCAPro criteria for Breast
and Ovarian cancer testing (BRCA1/2)
1 patient met the revised Bethesda criteria for
HNPCC testing (MLH1, MSH2 and MSH6)
1 patient met the criteria for familial malignant
melanoma testing (CDK4)
Conclusions
The nature of the patient questions
brought to geneticists in this study does
not suggest an over-utilization or misuse
of genetic services associated with the
removal of the barriers to services
Discussion
Insurance carriers have set up barriers to the
self-referral of patients to specialists
Many healthcare plans have made exceptions to
these restrictions for certain specialists, such as
dermatologists and obstetricians
It is widely anticipated that applications for

genetic information within the adult care arena
will grow significantly over the next decade
In such an environment, health insurance plans
should examine the option of removing any
prerequisites for referral to genetics services to
facilitate and maximize patient self-referrals
Future Directions of Research
Further work could examine patient satisfaction

with the genetics self-referral
Future work could focus on the optimal design for

incorporating the consultative services of genetic
professionals within healthcare delivery systems
Such integration will depend on issues such as:
1. The effect of self-referral to geneticists on consumer

satisfaction
2. The capacity of the genetics workforce to accommodate
this kind of new demand
3. The relevant genetics expertise of other medical
professionals
4. The impact of computer-based point of care decision
support on primary care-patient interactions on questions
of genetic risk
Genetic Consultation Sub-study

[of the BWH Family History Project]
Financial Support from:
NHGRI - Education and Community Involvement
Branch [V. Bonham and S. Harding]
BWH Biomedical Research Institute
Harvard-Partners Center for Genetics and Genomics
Special Thanks to:

Dr. Cynthia Morton
The 13,000 employees of BWH
III. Acknowledgements
We would like to extend a special Thank You to all
the many individuals and groups who helped to
make the Brigham and Womens Hospital Family
History Project a success, in particular, the entire
employee population of Brigham and Womens
Hospital and BWH Department of Public Affairs.
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Final Report on Phase 1:

Thank you for your interest in this work.

2D2. Presentation by Monica Giovanni at the 2007

The National Institute of Healths National Human Genome Research Institute

The Harvard-Partners Center for Genetics and Genomics (HPCGG) is a unique

The BWH Division of Genetics within the Department of Medicine has a

support of the hospitals executive management group throughout this effort. In

Outreach and Communication

B. Employee Based Project Summary Presentation

American College Medical Genetics

BWH Family History Project

BWH Family History Project

November 2005 - November 2006

BWH Family History Project

Why Hospital Employees?

DESCRIPTION OF THE PROJECT

Participating employees completely control their own information.

BWH employees who wish, can deliver information to providers.

Project was not designed to collect or analyze employee family health

Project data was survey derived

DESCRIPTION OF THE PROJECT

0.35 FTE computer programmer

Estimating Employee Participation

Distribution of Single Question Survey

Have you spent time in the last year gathering and/or

Single Question Survey

Two Major Multi-question Employee Survey Periods

N = 395 surveys received in first period

Two Major Multi-question Employee Survey Periods

N = 395 surveys received in first period

Completed Family History

Completed Family History

N = 965 surveys received in second period (November 2006)

Completed Family History

Motivation for completing the Surgeon

[check all that apply]

Final Survey Period

I thought it would be interesting

Reasons for not completing FHP

We got people talking

We got people talking

Discussed with their Health Care Professional

Estimated PCPs interest as very high

Based on survey data we estimate that during our BWH

What will it take move comprehensive Family

Gathering and organizing of family history data should be

Special Thanks to:

BWH Family History Project

C. Funding for this Project

Brigham and Womens Hospital (BWH)

National Human Genome Research Institute (NHGRI)

1A. Letter to the Hospital Community from Gary Gottlieb

Office of the President

Gary L. Gottlieb, M.D., M.B.A.

Dear BWH Community,

Appendix 2A. Family History Project Questions

2A. Family History Project Questions and Answers

1.) What is Brigham and Women's Family History Project?

2A. Family History Project Questions and Answers

5.) How do I participate? Where do I find the information?

version. Watch for updates on This Week @ BWH.

identification badges when you meet them.