IBD Registry Funding

Richard Driscoll
IBD Registry Development Lead

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Your questions?

1. How is the Registry going to be funded?

(subtext? is it really viable in the long-term? Should I
bother to get involved?)
2. Why are Trusts being asked to pay a
subscription for the Biologics Audit?
(subtext? will Trusts actually pay to participate?)
3. Why are we being asked to pay to use the
Web Tool?
(subtext? are they just trying to fund the Registry by
charging IBD Teams?)
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Registry Funding Plan

SETUP DEVELOPMENT MATURITY

Grant funding:
Perceived potential
through to recognised
value

Fee for Service:

There is proven
capability & value

PAST PRESENT FUTURE

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Sources of income
Charitable grants:
BSG, Crohns & Colitis UK, private donors, charities
Industry:
Unrestricted grants (supporting core costs)
Fee for service (investigator-led projects, joint
working initiatives, pharmacovigilance)
Academic & Research:
(direct costs plus contribution to core costs)
Use of data collection infrastructure
Access to Registry data
Registry/IBD Major Research projects
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What about IBD Audit?

Our national Audit & QI Programme was

centrally funded:
The Health Foundation
NHS England National Audit Programme
No IBD Team needed a budget line for Audit &
Quality Improvement
Trusts & Health Boards got their Audit & Quality
Assurance for free
We are all in a new situation! Registry and BSG
could not simply absorb the Audit costs.
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BSG/Registry perspective
NHS Audit & QI projects:
(NHS to fund direct costs plus contribution to core costs)
Biologics Audit and QI Programme

In principle, this could be funded centrally but none of the

devolved NHS administrations have said they will do this

OR

Trusts and Health Boards can be invited to participate on a

subscription basis

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Biologics audit subscription

Value proposition:
Final RCP report highlighted areas for improvement
New Biologics KPIs focus on these areas which all align
with NICE guidance & standards
Data collection reduced to these KPIs
Registry offering quarterly feedback on performance
and national benchmarking
IBD Biologics Audit included in national audit
requirements:
NHS England Quality Accounts
NHS Wales IBD in the national audit list
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Subscription cost

BSG-commissioned market research suggested maximum

acceptable cost of 3,000 pa.
2,500 agreed as reasonable relative to annual cost of
biologic therapy for a patient.
Discount of 1,000 offered to encourage early participation
and help affordability.
Trusts in England approached first and request directed to
CEOs and Audit Leads to establish funding as part of
Trusts Quality Assurance.
50% of Trusts in England have confirmed their
commitment to the subscription for 2017/18

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Web Tool cost-recovery

Web Tool costs:

Hardware: server hosting on N3 network
Software licensing: InfoFlex cost per Trust database
Staff support: site setup, user support, RCP data import etc.

BSG is only seeking to recover the actual cost of the

software license for each Trust.
The Web Tool offers an effective clinical managemnet
system for IBD patients as well as enabling data entry for
the Biologics Audit.
If a trust does not agree to pay the software cost, the
Registry will have to suspend access to the Web Tool.

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Your questions?

1. How is the Registry going to be funded?

There is a realistic plan for the longer term.
2. Why is my Trust being asked to pay a
subscription for the Biologics Audit?
We hope IBD Teams, Trusts & Health Boards will see
this as good value and wish to participate.
3. Why are we being asked to pay to use the
Web Tool?
The system offers local benefits and the BSG only
seeks to recover the per-Trust software license cost.
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 Thank you for your support

IBD Registry. All rights reserved ibdregistry.org.uk