2/26/13 Dr.

Steven Eisenberg CoPs (Communities of Practice)

sandyhubbard Whether today's topic is in your area of expertise or not, part of goal of #CPHC is that we learn and share. Please attend today at 1 pm ET. drseisenberg Totally psyched to be here with you all today!!! #CPHC

GailZahtz Good to see people excited about joining @drseisenberg in 9 minutes for #CPHC Get his ideas on Cancer CoP and explore ideas for yours! Drseisenberg NOW! Everything you always wanted to know about Cancer CoP* (*But were afraid to ask). #CPHC MarksPhone Hey all me and phone are here #cphc CinziaRolling @GailZahtz I can't be there today. Very disappointed I will miss it. Copy me on transcript if possible please. TY! #CPHC nursefriendly Hello Everyone, Andrew Lopez, RN from #NewJersey checking out Carpool Health #cphc a new #Healthcare #Tweetchat discussing #oncology today. DrNanN General Pediatrician with an interest in #patient engagement and #hcsm #CPHC Kamiyamay @drSeisenberg Glad you are taking the hour --will prove to be an awesome experience!!!!!!!!!!!!!!!!!!!!!!!!!!! #CPHC NatriceR hi all, Natrice retired PSW, presently family caregiver, hope all r having a grt day #CPHC GailZahtz @NatriceR Hi Natrice! TY for joining. I know you had some questions about how the CoP works- can you share those please? #CPHC CHopeMurray Sorry I am a bit late, catching up on last 15 minutes of the chat - fully engaged in 10 #cphc Nursefriendly No worries glad you made it :) RT @CHopeMurray Sorry I am a bit late, catching up on last 15 minutes of the chat - fully engaged in 10 #cphc RannPatterson @NatriceR @drseisenberg Hello! #CPHC GailZahtz @RannPatterson Hi thanks for joining us! How could a Cancer & other CoPs help serve patients and physicians? #CPHC @NatriceR @drseisenberg CareRxPharmD @GailZahtz @NatriceR @nursefriendly same questions for #pharmacists n #caregivers #cphc Ilanadesigns Interesting #CPHC discussion about patient empowerment and patient-centered communication via @drseisenberg GailZahtz Thanks for joining us @ilanadesigns We're looking at real action w/ @drseisenberg on how we can use these functions launching next wk #CPHC ChronicPainGPS Happy Tuesday everyone! Long time no C @drseisenberg! LOL Apologies for tardiness; listening in on #iompwp too! #cphc DrPlumEU #CPHC - Healthcare Social Media Transcript http://t.co/jH0n8Zczhl via @symplur GailZahtz @DrPlumEU TY for joining us- we will share transcript after. In meantime, how do you see the #CPHC CoPs and functions helping docs? #CPHC StorkBrian @GailZahtz @drseisenberg Sorry to be joining late... What I have seen all sounds very interesting #CPHC

GailZahtz @StorkBrian Glad you can join! Please ask questions about CoPs in general or from @drseisenberg about Cancer CoP as example 4 urology? #CPHC

GailZahtz Everyone can start introducing yourself and your interest in #Cancer the new CoP for #CPHC and why you're excited! GailZahtz I'm going to use this Avi today, we will be using the new @chathealth as people start to follow, and as we get a bit automated :-) #CPHC drseisenberg It is time for oncologist (and all docs) to activate about patient empowerment and patient-centered communication. #CPHC GailZahtz @drseisenberg How do you see the CoP model enabling patient empowerment and communications with physicians in your area of #Cancer? #CPHC Drseisenberg Long gone are the days of "oh, it's the googling patient again...". Sit down next to eachother and go on Carpool Health TOGETHER! #CPHC DrNanN I love googling #patients. It shows they want to learn, engage #CPHC We should ask them which diseases need #CoP GailZahtz @DrNanN We would like to ask patient more of what they need. If interested @MarksPhone is trying to put together questions for this #CPHC Kamiyamay @DrNanN Last night sitting in ICU doc came out and said a word....all 8 family members started googling to verify what he was saying #CPHC DrNanN @Kamiyamay LOL. I love it! My brother & I did same w/Dad's cardio thoracic surgeon. #CPHC Kamiyamay @DrNanN Excellent - it is a reality in all healthcare settings....knowledge in peoples hands.....lets let them ride in carpool #CPHC MarksPhone @DrNanN @Kamiyamay To own the moment & the surgeon you ask "What does that mean and explain to me as if I was in the 3rd grade #cphc Kamiyamay @DrNanN That takes time and commitment -like that answer! #CPHC GailZahtz @sandyhubbard I know @toughloveforx is planning a Print CoP. Sandy- how do you see the CoPs helping and working well? #CPHC @spafloating drseisenberg T1: It is EVERYTHING! Cancer is the most anxiety-provoking area of medicine! #CPHC nursefriendly Few #diagnoses prompt more #fear RT @drseisenberg: T1: It is EVERYTHING! Cancer is the most anxiety-provoking area of medicine! #CPHC GailZahtz @drseisenberg How can forums, uploads of personal stories, the evidence information from doctors, and more help with Cancer anxiety? #CPHC drseisenberg T1: Carpool Health and the Cancer CoP IS sitting down next to a oncologist and search for answers TOGETHER! (When your onc can't). #CPHC GailZahtz @drseisenberg Love this! Sitting down with an oncologist for answers! How do you see that working with the forums best? #CPHC

Nursefriendly @drseisenberg That kind of 1 on 1 interaction with a #doctor, you don't see often, much less with an #oncologist. Very refreshing :) #cphc Drseisenberg T1: CoP is about "we're all in this together"...Clinicians, researchers, advocates, docs, patients, FAMILIES!!!!! #CPHC CareRxPharmD Everything in health n medicine should follow this. Takes a village @drseisenberg: T1: CoP is about "we're all in this together". #CPHC" sandyhubbard Yes, #CPHC philosophy in a nutshell. RT @CareRxPharmD Takes a village. CareRxPharmD Absolutely, I see awesome http://t.co/vrQ4qPR9zZ collaboration per our mission to educate #patients #caregivers @GailZahtz CoP #CPHC GailZahtz @CareRxPharmD Terrific! So I will put you down to lead the pharmacists CoP!! #CPHC GailZahtz At V.! we have now these CoPs that need or have leadership, then we have forums, content, etc- how can people make it work? #CPHC DrNanN @GailZahtz @natricer Please give a brief explanation or example of a CoP #CPHC GailZahtz @DrNanN The CoP is a group sharing same interests that then has ability to share content, discuss issues in forums, and more in time #CPHC NatriceR @GailZahtz Gail, I am sure others want to know, where are the CoPs how do you join, access, share? I am sorry to be so lost! #CPHC GailZahtz @nursefriendly @drseisenberg what makes this very different is combination of physicians and patients, caregivers at the same place #CPHC MarksPhone http://t.co/RzbXiLuDVH CoP set out to solve common problems shared by the members What is needed first is a needs assessment #cphc ALifeGuide @NatriceR Yes, the CoP is confusing, and would please like questions on how to clarify! 1st, its group w/ leadership of same interests #CPHC GailZahtz @NatriceR Yes, the CoP is confusing, and would please like questions on how to clarify! 1st, its group w/ leadership of same interests #CPHC CareRxPharmD Full Understanding will ensure effective CoPs "@GailZahtz: @NatriceR Yes, the CoP is confusing, would please like questions on how #CPHC GailZahtz @CareRxPharmD Trying- so if you could keep asking questions, I can answer- problem is too much in my head :0 #CPHC Kamiyamay @CareRxPharmD yes I do good with one two three lists-don't laugh Gail ! #CPHC CareRxPharmD Yes, me 2 @Kamiyamay: @CareRxPharmD yes I do good with one two three lists-don't laugh Gail ! #CPHC" GailZahtz @CareRxPharmD @Kamiyamay Not laughing! We want a great easy user experience. Please explain 3 lists! #CPHC Kamiyamay @GailZahtz hard to explain without drawing :-) oh there are those pics again #CPHC

Kamiyamay @GailZahtz Gail instead of paragraphs people get lost in just 1,2,3,4 etc so they can follow steps to make happen #CPHC GailZahtz @Kamiyamay So do you mean #CPHC generated content? How can we give this so people understand abilities? Were thinking videos also.

drseisenberg T2: Forums/stories/uploads make it accessible and "on the court", not just talking about it but ACTIONABLE research! #CPHC nursefriendly T2 There is so much to know when you are #diagnosed with #cancer, that the more we can put out in #laymans terms, the better. #cphc nursefriendly @drseisenberg T2 Yes-gets frustrating when patients "Nod" their heads in agreement, then you find out later they haven't got a clue ;( #cphc RannPatterson @nursefriendly The truth! Talk plain. #CPHC Nursefriendly Why do we feel that #patients "can't handle the truth" ? Disturbing :( RT @RannPatterson: @nursefriendly The truth! Talk plain. #CPHC NatriceR @nursefriendly sometimes its more about not wanting to give that truth..to patients perhaps..painful, stressful, #CPHC Sandyhubbard @nursefriendly @RannPatterson Agree. Patients make choices based on info. Avoiding truth/discomfort delays and obstructs that process. #CPHC sandyhubbard Maybe nod means "trying to understand" RT @nursefriendly frustrating when patient "Nod" head, then you find out they haven't got clue. #cphc RannPatterson @sandyhubbard Love your reply! #CPHC sandyhubbard @RannPatterson I am a nodder - my way of trying to build a bridge, seek to understand. #CPHC nursefriendly @sandyhubbard Maybe they "Nod" because they don't want to admit they don't understand, don't want to look foolish-It is self defeating #cphc sandyhubbard @nursefriendly Conclusion is that a "Nod" is not reliable barometer of patient's understanding/retention. Need new ways to gauge it. #CPHC Kamiyamay @sandyhubbard I don't stop until they verbalize or engage :-) #CPHC Nursefriendly @sandyhubbard A major failure in #patient #education is we don't gauge baseline literacy, or measure comprehension following teaching. #cphc GailZahtz @drseisenberg Yes, by keeping everything curated and in time with data points be able to provide real time research on outcomes! #CPHC GailZahtz Each CoP can be divided by a common role, diagnosis, or an existing community, or a group to work on making #CPHC better (say data points) Drseisenberg Physicans are activating every day. CoP is a place to activate with powerful partnerships/patients/advocates/caregivers/FAMILIES #CPHC

GailZahtz Yes @drseisenberg physicians like you will "lead" a group and bring in other patients and doctors who are concerned about same issue #CPHC MarksPhone @GailZahtz Or problems patients are seeking solutions to #cphc Nursefriendly @MarksPhone Agree, let perceived needs of #patients & their families be a starting point. What don't they understand? Struggle with? #cphc MarksPhone @GailZahtz @drseisenberg W/knowing their needs focus on what needs to be learned before achievement Content needs context to work #cphc sandyhubbard With #CPHC CoP, physicians will "lead" a group and bring in other patients and doctors who are concerned about same issue. Kamiyamay @sandyhubbard Sandy I see anyone who leads a group be it caregivers, nurses and more #CPHC GailZahtz @MarksPhone In the end it's all about people seeking solutions. So how with the CoP model can we help people get solutions? #CPHC sandyhubbard Dynamic model so can be central resource for all. RT @GailZahtz Curated, in time w data points for real time research on outcomes! #CPHC Nursefriendly @drseisenberg T2 Can be very reassuring to a #patient, when they read experiences of others to know "It Is Not Just Me." :) #cphc sandyhubbard Key benefit is that aspect. RT @nursefriendly reassuring to patient, when they read experiences of others to know "It Is Not Just Me." #cphc drseisenberg It's about time for #5G: Generous Group Googling Generates Greatness. CoP for Cancer IS THAT #5G!!!!! #CPHC GailZahtz @drseisenberg How does the CoP enable groups to create something greater than individuals? #CPHC Sandyhubbard Will grow w/ interests and expertise RT @GailZahtz CoP is group sharing same interests > share content, discuss issues in forums, etc #CPHC Kamiyamay @drseisenberg CoPs make me think of conditions of participation....LOL #CPHC GailZahtz @Kamiyamay @drseisenberg Maybe joking- but seriously, what kinds of conditions of participation would make it best for users? #CPHC nursefriendly Hello Everyone, if new to #tweethchats, try Tweetchat . com, login with Twitter. http://t.co/5TE34w9xeS #cphc drseisenberg Cancer is a family disease. And I don't mean just the patient's family. #CPHC drseisenberg It's the family of everyone who has ever had cancer, researched cancer or treated cancer. #CPHC GailZahtz @drseisenberg How can we help patient families and everyone with uploads of stories, information, resources, forums, calendars, etc? #CPHC

Kamiyamay @drseisenberg You are so right.....affect all #CPHC CHopeMurray like it - very inclusive RT @drseisenberg: Its the family of everyone who has ever had cancer, researched cancer or treated cancer. #cphc sandyhubbard New CoP model at #CPHC RT @GailZahtz what makes this very different is combination of physicians and patients, caregivers at same place. MarksPhone @GailZahtz you create a context for knowledge acquisition w/an understanding of goals w/in share group seeking similar solutions #cphc drseisenberg It's time to stop just talking about 'we're all in this together', and start taking ACTIONABLE STEPS! CoP is that first step! #CPHC GailZahtz @drseisenberg Yes,CoP is about people joining together- take a common interest or goal, and then use the technology to join together #CPHC drseisenberg Stories/info/calendars/uploads/etc make it workable. It's all about workability in the REAL WORLD. Not just an idea. It's actionable. #CPHC GailZahtz @drseisenberg Definitely actionable- can you give hard examples of how this could work to help? Like a step by step? #CPHC Kamiyamay @drseisenberg Excellent....put the work into action, simple steps to follow #CPHC CareRxPharmD Pharmds 2 @drseisenberg: Time for oncologist (and all docs) to activate about patient empowerment, patient-centered communication. #CPHC" GailZahtz @CHopeMurray You helped create the idea of a community from ground up- can you explain more? #CPHC @drseisenberg CHopeMurray Starting from the ground up is a bit of a misnomer - usually foundations are there if you look for them #cphc drseisenberg T2: Info goes in one ear and out the other in the office. we need a safe place to let the info marinate and sink in/process... #CPHC GailZahtz I will continue to try to answers on the CoP model, while @drseisenberg can explore the example of his plans for the Cancer one. #CPHC GailZahtz So we have pull downs "CoPs" there you have articles, videos, whatever you want to load on, say cancer. Then you have forums about #CPHC GailZahtz The initial features include: able to do your own stories or EBM medical information, pics, videos, forums by topics, and calendars #CPHC Drseisenberg Step 1: Diagnosed then immediately get into your head and hard to hear anything else. #CPHC sandyhubbard Has to be big obstacle for physicians and their team to share information effectively. RT @drseisenberg hard to hear anything else. #CPHC RannPatterson Called "shock". RT @drseisenberg: Step 1: Diagnosed then immediately get into your head and hard to hear anything else. #CPHC

Kamiyamay @RannPatterson Wow-you called it....everything else is a daze.. #CPHC Drseisenberg Step 2: Go to Carpool Health and start the process of healing...how? I'll tell you. #CPHC Drseisenberg Step 3: See that people are here, and sharing, and alive, and had the same exact thing as you. Docs love you here. #CPHC Drseisenberg Step 4: You start to feel that there is hope/support/love/a carpool #CPHC Drseisenberg Step 5: You feel that love/support/advocacy/family of care/you jump in the car/you tell me where you need to go today/we start driving #CPHC Drseisenberg Step 6: We make our first stop - research with a side of compassion. #CPHC GailZahtz @drseisenberg How can we use the forums and the "blogs" and calendars, etc to start research and grow compassion? #CPHC Drseisenberg Blogs are simply the best way to hear what is real/vital/on the court/workability in the real world/what works/what does not work #CPHC Drseisenberg Blogs connect, blogs exhale love and compassion, blogs inform on a foundation of enrollment and possibility #CPHC GailZahtz @drseisenberg How can users use the blogs- say a cancer patient or another oncologist to grow, help others, etc? #CPHC Drseisenberg Step 7: We take a pit stop at the #7Cs diner (caring communication compassion connection collaboration creativity community)! #CPHC Drseisenberg Step 8: Now, connected to a community founded on love and self-expression, you start to feel powerful in your own shoes #CPHC Drseisenberg Step 9: You are now versed in connecting and contributing the FAMILY of people taking turns driving the CARPOOL #CPHC Drseisenberg Step 10: You are starting 2 feel an inner sense of peace, of confidence, that I now have a safe place 2 go, to self-express, 2 learn #CPHC RannPatterson @drseisenberg Why I believe GP's/Onc shd hv #psychologists in office. #CPHC Drseisenberg Step 11: The #7Cs are now a part of your soul - caring communication compassion connection collaboration creativity community - really #CPHC Drseisenberg Step 12: You take a really nice cleansing deep breath and repeat steps 1 though 12. #CPHC Kamiyamay @drseisenberg So important....pause, breath and do again...excellent! #CPHC

giasison Infographic on Neurofibromatosis http://t.co/lg6YgRaBYZ via @teaminspire #hcsm #cphc CHopeMurray Based on foundations what are generic rather than specific requirements/issues, find common ground fr next layer of knowledge/approach #cphc Nursefriendly For #cphc latecomers, here is todays transcript in progress, can respond from within. http://t.co/t0BPHhFOJK CHopeMurray Identify organizations/groups with similar need and dispositions, and representatives who are willing to progress understanding/output #cphc MarksPhone @CHopeMurray the question you ask is like 'you have a neighbor w/diabetes who asks you how to live w/it' What do you tell him? #cphc

CHopeMurray @MarksPhone: I dont know the answer but I can probably get you in touch with a community that would be better armed with good advice #cphc MarksPhone You move the pointer from the person to a surrogate to get honest understanding #cphc GailZahtz @drseisenberg Can you give example of how pts/family can use the forums or "blogs" to help each other? #CPHC Drseisenberg Blogs are about enrolling others in the possibility that you have created for yourself and your life regarding your cancer #CPHC Griffglen hi @nursefriendly-immediately thought of this gr8 work by colleague/friend+++ @janelwood http://t.co/Lp1xlbFFJD scroll for short video #cphc GailZahtz @griffglen TY for joining us! How do you see these working together? We love collaboration! #CPHC @nursefriendly @janelwood sandyhubbard CoPs offer place where people can have intuitive interface to find out what they need to know and resources in one place, 24/7. #CPHC DrNanN @sandyhubbard @drseisenberg Having an online presence helps. #Patients can get answers they didn't think of while in office #CPHC GailZahtz @DrNanN @sandyhubbard @drseisenberg Yes! Big difference: having physicians run CoP so available to answer forum Q's and load EBM info #CPHC Nursefriendly @DrNanN @sandyhubbard @drseisenberg Yes, we need to encourage them to learn what questions to ask, ask them without hesitation. #cphc Sandyhubbard @DrNanN Patients can feel so isolated, in their quest for understanding and resources and feeling alone in the process. #CPHC GailZahtz @sandyhubbard @DrNanN Yes, to help with this isolation, people can share their own stories or questions, docs can load up EBM answers #CPHC NatriceR okay all this discussion is great..but HOW do I find my CoP of interest? steps please>? #CPHC GailZahtz @NatriceR So there will be drop downs from top Navigation with lists of existing CoPs (step one) for content and forums. #CPHC NatriceR Thx Gail! RT @GailZahtz:So there will be drop downs from top Navigation with lists of existing CoPs (step one) for content and forums. #CPHC GailZahtz Another step @NatriceR (TY for asking! I know many want to know!) Is you can CREATE a CoP based on your group's interest #CPHC GailZahtz Also, you can pull down articles, or the idea forums, etc and find lists of all, then that will lead you to ones by the topic (CoP) #CPHC NatriceR Thanks Gail for the step by step instructions on finding CoPs or creating them... #CPHC CHopeMurray @gailZahtz lists area good start, but often benefit from some form of organization, policies + standards to avoid ambiguity/conflict #cphc GailZahtz @CHopeMurray We are going to need more policies. I am hoping someone will lead a CoP on protocols, policies and UE! #CPHC

CHopeMurray I can help RT @GailZahtz: We are going to need more policies. I am hoping someone will lead a CoP on protocols, policies and UE! #cphc GailZahtz Is that a yes to lead that CoP?!!! RT @CHopeMurray: I can help- We are going to need more policies-a CoP on protocols, policies UE! #cphc GailZahtz @CareRxPharmD You had talked about running a pharmacists CoP Are you still planning? How could this help? #CPHC CareRxPharmD sorry 2 b late from http://t.co/vrQ4qPR9zZ reviewing @drseisenberg tweets @GailZahtz: @CareRxPharmD u had talked abt a pharmds CoP. #CPHC" GailZahtz @CareRxPharmD Yes. You had talked about running a pharmacists CoP and was asking if that's still your plan #CPHC CHopeMurray @nursefriendly @drseisenberg its hard in 140 :) but steps 1-4 Dr Stephen indicates gets you to the foundation #cphc sandyhubbard That is a key element > RT @CHopeMurray get you in touch with a community that would be better armed with good advice #cphc MarksPhone W/a discussion of cancer need to understand stage type experience etc impacts ability to learn need to understand where they reside #cphc drseisenberg Blogs can be co-created with a patient and an oncologist - a view from the other side of the table! #CPHC CHopeMurray Blogs are commentaries on experience, knowledge and opinion - in most cases they are empathetic, however may need grooming :) #cphc Drseisenberg Blogs are about self-expression - which is the foundation for healing communication. #CPHC Drseisenberg The you hold in the fear/anxiety/lack of self-expression, the more it may come out in different parts of our bodies #CPHC Nursefriendly @drseisenberg #cphc by "holding it in" do you mean the stress, #anxiety #fear may manifest as #psychosomatic illnesses? Drseisenberg SELF-EXPRESSION IS THE KEY TO POWERFUL HEALING PARTNERSHIPS #CPHC sandyhubbard Filters of pain and disbelief may frighten those who need this info but is part of process, too. @CHopeMurray may need grooming :) #cphc nursefriendly @drseisenberg Reading #patient blogs gives a down to earth, "boots on the ground" perspective, you don't often find. W/ grain of salt #cphc CHopeMurray I like blogs, but if I need specific answers, I either seek an expert or source of expertise (starting with any FAQs). #cphc RannPatterson Thanks to you, chats & Twitter LOL RT @drseisenberg: SELF-EXPRESSION IS THE KEY TO POWERFUL HEALING PARTNERSHIPS #CPHC

Nursefriendly Great idea :) RT @drseisenberg: Blogs can be co-created with a patient and an oncologist - a view from the other side of the table! #CPHC CHopeMurray Blogs can be hard to navigate, especially after time and a certain volume. They also have value over time + need to be resurfaced #cphc CHopeMurray There is often more value in the comments on blog posts than in the posts themselves, this also needs curation and promotion #cphc GailZahtz @CHopeMurray To help people navigate, they can go to list of all blogs, or they can find the ones at the CoP / interest area. #CPHC NatriceR @GailZahtz so a blog leads you to a specific group of support? #CPHC GailZahtz @NatriceR You can get to group of support (AKA CoP) either through drop down of the titles under CoP, through blogs, or thru forums #CPHC DrPlumEU @GailZahtz #CPHC CoPs help HCPs learn the language of 7Cs and 5Gs Feel more connected to suffering with social network which makes it safer RannPatterson @DrPlumEU @drseisenberg That's why there needs t/b a guide (psyche/counselor) AT THE OFFICE to help patient onward. #CPHC DrPlumEU @RannPatterson @drseisenberg #CPHC we have a chaplain on site weekly with link to external resource for spiritual needs drseisenberg Powerful partnership begin the healing #CPHC GailZahtz @drseisenberg How do you plan on using the Cancer CoP to build more partnerships? #CPHC Sandyhubbard I really like how @drseisenberg is explaining the steps to using CoP on #CPHC website, with resources, compassion. NatriceR @sandyhubbard me too Sandy...me too! feeling the love and compassion already.. #CPHC DrPlumEU @GailZahtz #CPHC The late Anne McPherson was pioneer in creating patient stories at Oxford http://t.co/FnLixymGOC GailZahtz @DrPlumEU How can we encourage patients to share stories here? #CPHC Kamiyamay @GailZahtz Many people hesitant to share.... #CPHC DrNanN I live that a new #CoP can be created by a #patient, not just providers. Let it be patient driven #CPHC Kamiyamay (So Agree to this!!) RT @DrNanN: I live that a new #CoP can be created by a #patient, not just providers. Let it be patient driven #CPHC

Drseisenberg Over are the days of isolation - docs and patients all of the world can support eachother in getting through the toughest cancer tx #CPHC

GailZahtz @NatriceR Questions really help! If you could keep asking questions I can answer specifics! TY #CPHC Drseisenberg GONE ARE THE DAYS OF 'DON'T GO ONLINE AND RESEARCH YOUR HEALTH' - NOW ARE THE DAYS OF 'TAKE MY HAND AND LET'S RESEARCH TOGETHER' #CPHC MarksPhone @drseisenberg It's more about if I don't manage my health &HC I will be screwed & there is an entire generation dying: a wakeup call #cphc Ilanadesigns Important for empowerment -MT @drseisenberg: GONE= 'DON'T GO ONLINE AND RESEARCH YOUR HEALTH' - NOW IT'S 'LET'S RESEARCH TOGETHER' sandyhubbard We have heard so many great ideas already! RT @GailZahtz you can CREATE a CoP based on your group's interest. #CPHC NatriceR @GailZahtz who gets to view these forums anyone? #CPHC GailZahtz @NatriceR Anyone can view forums to start, we can build in privacy as people want. If this is a feature you want- 1 forum 4 requests #CPHC sandyhubbard Understand privacy yet sharing is what helps others. RT @GailZahtz We can build in privacy as people want if this is feature you want. #CPHC GailZahtz @sandyhubbard Privacy built in time. Definitely have transparency. The more we have people to write about CoP/site- more people know #CPHC DrPlumEU #CPHC CoP patient stories so important but many wish them to remain private. Rules of confidentiality difficult to enforce here Griffglen @drseisenberg other class of digital resource I can recommend built for family physician http://t.co/9k5YEIhuxz @nursefriendly #CPHC sandyhubbard Will be interesting to hear how #CPHC CoP can be used to build partnerships? nursefriendly @sandyhubbard CoPs, hold some pretty awesome potential :) Can't wait to see a few launched. #cphc Kamiyamay @nursefriendly Agree---- just a rebel....wish called something else...will a pt know what a CoP is>>look how many asked today #CPHC NatriceR @drseisenberg your involvement & personal feelings come thro clearly, thx for being a leader #socmed 4 change #patients #CPHC GailZahtz @NatriceR @drseisenberg A great example of how the strength and style of each CoP is directed by leaders and group! #CPHC DevHopeSante @GailZahtz that sounds great. Generally, what measures is #CPHC setting fourth to stop #cancer completely. GailZahtz @DevHopeSante I am sure we would all love to stop cancer. How do you and @drseisenberg see the CoPs moving research for cures? #CPHC GailZahtz @DevHopeSante Yes, which are are you asking about? #CPHC GailZahtz @DevHopeSante @drseisenberg We fall under evidence based umbrella, but anyone trained who can talk on breakthroughs would be great! #CPHC

Sandyhubbard A chat topic one week maybe. RT @GailZahtz We fall under evidencebased umbrella. #CPHC GailZahtz @DevHopeSante @drseisenberg These are the times of areas we would like to discuss in forums #CPHC

Sandyhubbard Important to build a #CPHC forum with credible information that tops search engines rather than crowdsourced nonsense from aggregators. GailZahtz @drseisenberg So would you put up content in words, video and/or pictures to help patients go through this process? #CPHC Drseisenberg YES RT @GailZahtz: @drseisenberg So would you put up content in words, video and/or pictures to help patients go through this process? #CPHC DrNanN @GailZahtz @drseisenberg I try to blog, then video the blog on YouTube. #CPHC GailZahtz @Kamiyamay @DrNanN @drseisenberg Since we have video and YouTube, we can help anyone share their content on YouTube and elsewhere #CPHC GailZahtz @DrNanN We would love to have you! Are you most interested in peds or genetics or either? #CPHC GailZahtz @DrNanN A genetic leader will be much harder to find! So if you could "own" that it would be great!!!! Today is Rare Disease Day. #CPHC DrNanN @GailZahtz I'm interested in both #CPHC GailZahtz @DrNanN Terrific! So could you take on leadership of the genetics CoP and I will put you on the pediatrics CoP with others? #CPHC DrNanN @GailZahtz sounds great. Thank you. #CPHC Sandyhubbard All of them! People hear/learn/retain info differently. RT @GailZahtz Put up content in words, video, pictures? #CPHC Kamiyamay @sandyhubbard Oh I go for plenty of pics.....seniors on my fb love them #CPHC GailZahtz @Kamiyamay So how can we encourage people to load pictures? Would you like #CPHC information in pictures and video over text? sandyhubbard Having content expressed in many forms allows patients of various ages to advocate for themselves with foundation of knowledge. #CPHC Drseisenberg CoP is the vehicle for integrity, workability, enrollment and possibility in a world of healthcare that makes a profound difference. #CPHC cstar21 @drseisenberg There is an eight no matter what you say even with insurance CASH #CPHC RannPatterson @drseisenberg gr8 idea- but: person dx cannot think str8. Must have IN-FLESH HELP FIRST! #CPHC

StorkBrian @GailZahtz @drseisenberg Apologize as I missed several steps What process will be used to determine recommended resources? #CPHC GailZahtz @StorkBrian Resources will be in V.2 because we will need a medical review board to determine protocols for resources, etc #CPHC GailZahtz Then other physicians could put up their expertise to share and be permanent for all? #CPHC @drseisenberg Drseisenberg And connect the docs RT @GailZahtz: Then other physicians could put up their expertise to share and be permanent for all? #CPHC drseisenberg Content is more powerful when it is really authentic, actionable, based on a foundation of possibility - SHARING is the SOURCE #CPHC CHopeMurray actionable content is key RT @drseisenberg: Content's more powerful when its authentic, actionable, based on foundation of possibility #cphc MarksPhone @drseisenberg and focused on the known problems patients are seeking to solve. We cannot be passive in understanding the learner. #cphc CHopeMurray If there is a controversy then I look for a message board hosting recognized experts. I do see MBs + FAQs as different to blogs #cphc nursefriendly @CHopeMurray #cphc #Blogs can be a great resource, however you must take them with a "Grain of Salt" and realize anyone can write one. CHopeMurray well said RT @nursefriendly: #cphc #Blogs can be a great resource, however take them with a "Grain of Salt" and realize anyone can write one DrNanN @CHopeMurray Sounds like I need to learn how to use MBs #CPHC CHopeMurray @DrNanN: I may have made it sound too easy, but one thing we can do is to identify the best MBs to support our communities #cphc drseisenberg Actionable/lovely/engaging content that start the process of true healing - from the inside out. #CPHC NatriceR i like how you talk!RT @drseisenberg: Actionable/lovely/engaging content that start the process of true healing - from the inside out. #CPHC CHopeMurray @drseisenberg its the actionable quality that turns a community of interest into a force for change #cphc DrPlumEU Sorry have to bail out of #CPHC to deal with evening clinic 18:30 to 20:15 :( This is 1:4 activity and not good for my health sandyhubbard @DrPlumEU We are glad you could be here today - thank you! #CPHC GailZahtz @DrPlumEU Thank you for joining us! Please contact on other places on how you'd like to be involved! TYSM!!!! #CPHC Drseisenberg It's about getting off the stands and onto the court to start really playing the game - the game of building confidence/inner strength #CPHC

Bacigalupe If Drs R afraid 2? how do Pts engage? Afraid to Speak Up to Medical Power http://t.co/gvqh9FBxIN #cphc #GratefulMedChat MT @ChronicPainGPS Drseisenberg The days of patients blinding following any doctor's advice are over - we ALL to embrace sharing knowledge/evidence/decisions/strength #CPHC Kamiyamay @drseisenberg Wish I could share an experience from last night...blinding not completely over but we must change!!!!! #CPHC Drseisenberg This #carpool lane is filled with that #caring #communication #compassion #connection #collaboration #creativity #community #7Cs #CPHC GailZahtz TY for coming! How can these CoPs with content, forums, calendars, learning help engage patients & docs? #CPHC @bacigalupe @ChronicPainGPS GailZahtz @DrNanN Thank you! Now- using here- what questions would you have in starting a CoP in genetics- hard examples are helping people! #CPHC DrNanN @GailZahtz #Genetics would be several #CoPs set up by disorder or topic. One topic could be #screening tests #CPHC GailZahtz @DrNanN Agree. The idea @drseisenberg has for cancer is to start one, then as physicians and patient grow, break off into many #CPHC Drseisenberg A view from the other side of the desk is a view into another world of possibility - a world where EVERYONE CONTRIBUTES TO HEALING #CPHC Drseisenberg CARING CONTRIBUTION leaves NO ONE OUT! Every single human being on the planet can make a difference for someone in pain. #CPHC ChronicPainGPS Yes we CAN! MT @drseisenberg: CARING CONTRIBUTION leaves NO ONE OUT! Every human being can make a difference for someone in pain. #cphc GailZahtz In remaining time, I will address what people can do to prepare their CoP this week. #CPHC GailZahtz What you need is content, community, questions. So if you put together who your CoP is, and any pics, video, articles we'll pre-load! #CPHC GailZahtz So as a CoP leader, get me articles, pictures, videos, anything ahead so it's there to start #CPHC GailZahtz Then you will want to start contacting people who are part of your community so they can be ready to join #CPHC

GailZahtz @drseisenberg TY for runnning on your own without needing me! I am trying to answer CoP questions! XO #CPHC Drseisenberg Loving self-expression in its varied forms IS CARING CONTRIBUTION IN ACTION. #CPHC

Drseisenberg IT ALL BEGINS AND ENDS WITH POWER SELF-EXPRESSION THAT CONTRIBUTES TO HUMANITY'S HEALTH #CPHC GailZahtz @ChronicPainGPS Patti- would you be interested in helping lead or coordinate a pain management CoP? I know many docs who would join u #CPHC Kamiyamay @GailZahtz @ChronicPainGPS - that would be awesome! #CPHC ChronicPainGPS @GailZahtz - Absolutely! I would be honored! #cphc GailZahtz @ChronicPainGPS Fabulous! I have some docs, I will put you on as person in charge, if you can get content I can pre-load! #CPHC GailZahtz Yeah! RT @ChronicPainGPS: @GailZahtz - Absolutely! I would be honored! #cphc GailZahtz @Kamiyamay And Camea- are you set for your nursing or will it be hospice- I know you discussed both possibilities. #CPHC Kamiyamay @GailZahtz Nursing advocacy when pt enters healthcare system #CPHC GailZahtz @Kamiyamay Okay- you are on to lead nursing advocacy! #CPHC GailZahtz @nursefriendly Andrew, were you planning on doing a nursing entrepreneur CoP or focusing on community management, or something else? #CPHC Drseisenberg THIS CARPOOL IS COMING TO PICK YOU UP; YOU JUST HAVE TO GET IN AND ENJOY THE RIDE. DESTINATION IS UP TO YOU. #CPHC sandyhubbard Carpool works best when people are ready to drive when it's their turn, to collaborate on roadmap, to empower those around them. #CPHC NatriceR @sandyhubbard #CPHC and we all know that asking directions is the easiest way to find destination:) Drseisenberg Then all that there is left to do is enjoy the ride... #CPHC ChronicPainGPS Love this! I'll drive! MT @drseisenberg: THIS CARPOOL IS COMING 2 PICK U UP; JUST HAVE 2 GET IN & ENJOY THE RIDE. DESTINATION IS UP 2U #cphc Kamiyamay So exciting....think the car may have wings and a jet engine...a little revved up from Chitty Chitty bang bang though..LOL..excellent! #CPHC drseisenberg FINAL STEP: Start from foundation of love. Love of humanity. Love of the global family. Love of health. Love of making a difference. #CPHC primushscm @GailZahtz @bacigalupe @ChronicPainGPS just what is needed #CPHC interaction, information updates to better healthcare. GailZahtz What do people need to know to prepare for their CoPs for next week? #CPHC ChronicPainGPS Will B in touch! RT @GailZahtz: What do people need to know to prepare for their CoPs for next week? #cphc GailZahtz @NatriceR Do you understand enough to answer if you will be running caregiving or still questions? #CPHC NatriceR @GailZahtz I think I still need a dress rehearsal!!!!! #CPHC

GailZahtz @NatriceR LOL Okay- what would a dress rehearsal look like? All of your questions are everyones! #CPHC NatriceR @GailZahtz #CPHC I wont feel comfortable til I have actually done it...Google is another world for me - with aliens in it;) GailZahtz @NatriceR It is not on google, it will be on http://t.co/5WKMqOasbn #CPHC NatriceR @GailZahtz #CPHC well if it is on the website, that should help...guess I need to make a sign in for myself? login? ID? ALifeGuide @NatriceR First sign on will be from social media account or us email (we prefer a social media account) V.2 will have a full sign-in #CPHC Kamiyamay @NatriceR So glad I am not the only one who feels that way....sooooo confusing #CPHC GailZahtz @Kamiyamay @NatriceR Everyone is confused- that is my fault, and trying to fix with your questions! #CPHC NatriceR @GailZahtz I guess I will need a tutorial from you Gail...and since the forums havent begun yet, thats why I feel lost? #CPHC ChronicPainGPS @NatriceR you and me both! @GailZahtz! LOL #cphc Sandyhubbard @NatriceR We can engineer the interface around your needs and resources on http://t.co/u0RlW1MGjJ #CPHC GailZahtz @NatriceR I would like to do a tutorial ahead. Could we do a Q&A on skype or somewhere so I can know what to put in? #CPHC Others want? NatriceR @sandyhubbard @GailZahtz #CPHC that sounds technical!! interfacing..not part of my make up yet;) but willing to try:) GailZahtz @ChronicPainGPS @NatriceR I would like to do a Q&A of what to include in the tutorial- we could do on G+, somewhere else- or emails? #CPHC Kamiyamay @GailZahtz I want in if available #CPHC CHopeMurray Can I suggest curation as a topic 1 week? Its loosely used + applied to many apps that have little to do with information development #cphc sandyhubbard @CHopeMurray Great idea, Colin, to cover Curation as a chat topic. #CPHC nursefriendly @StorkBrian @GailZahtz @drseisenberg #crowdsourcing will be the order of the day :) Sounds like the community will be rating, deciding #cphc GailZahtz We are so grateful that @drseisenberg could just go ahead and drive this on Cancer while I was answering CoP questions! TY #CPHC sandyhubbard We strengthen this community by connecting and following here and on the other platforms where you spend time. Find us on G+, too! #CPHC DrNanN Gotta run. Great chat. #CPHC

ChronicPainGPS Must go back 2 read transcript! I missed SO much!! #cphc

Drseisenberg Thank u all 4 having me today. I look forward 2 helping each 1 of u in any way I can. Sending #love through the #twitterverse. #CPHC GailZahtz @primushscm @bacigalupe @ChronicPainGPS We want the medical information to be EBM, and not medical advise. #CPHC sandyhubbard What a great mental picture @drseisenberg has painted for us today about how #CPHC CoPs can work. GailZahtz I will look forward to going through all of this. Can anyone do a storify or other curation other than transcript so we can capture? #CPHC Drseisenberg We are transforming cancer one empowering relationship at a time. #CPHC sandyhubbard To all CoP managers, we will help you through the process. We are just happy to get your commitments today #CPHC @Kamiyamay @NatriceR sandyhubbard Let's give a big hand to @drseisenberg for volunteering to explain concept and possibilities of the CoP model for #CPHC - he did great job!