Meaningful Patient Involvement
In FP7 Research
Nicola Bedlington
Open Information Day
8 June 2010
The presentation
An introduction to European Patients’ Forum
The rationale behind and added value of involving patients meaningfully in
health related research
The outcomes of the Value+ project on meaningful patients’ involvement in
EU health related projects and policies, led by the European Patients’
Partnering with patient organisations – how EPF can help
European Patients’ Forum
Strong and united voice
Umbrella body of 45 European disease specific patients’
organisations and national coalitions
150 million EU patients with chronic conditions
Vision: high quality, patient-centred equitable healthcare across the
Literature – Patient Involvement
Considerable benefits of patient
Need for increased policy attention
and investment
‘“Research with” rather than ‘research
on’ patients an imperative – patients –
ultimate beneficiaries
Source : ‘What research means to patients, and the importance of
partnership with practitioners in research’ Hazel Thornton - Department of
Health Sciences, University of Leicester, Leicester, UK
Evidence from the project on Value+ on FP6 and FP7
patient involvement weaker in research
projects than in other projects, especially
those focused on clinical trials, studies or
development of technologies and devices
Limited patient involvement at the
inception and planning stage, in the
governance structures of project
Know-how in Patient Involvement
Project coordinators - clear interest in developing patient involvement
Challenge - how to translate this in practice
Counter attitude -patients’ organisations not credible and equal partner
Education of patients and the public about research concepts is essential
‘The Value and Challenges of Participatory Research: Strengthening Its Practice’, Margaret
Cargo and Shawna L. Mercer
Strengths of Patient Involvement
When patients engaged from the onset - more
committed to applying research in real life
Key strength -integration of researchers’
theory expertise with patients’ real-world
knowledge and experiences .Balance scientific
excellence with social and cultural relevance
Patients’ organisations – key role in translating
outcomes into policy environment, and
dissemination of results in an accessible and
inclusive way
Value+ Outcomes
Series of tools:
to enable patients to become more
involved in EU funded projects including
research projects
for project promoters and coordinator to
acquire more skills to enable them to
facilitate in practice
a series of policy recommendations look
at linking research project outcomes with
patient – centred policy development
Comprehensive Directory of Patient
Organisations in every EU member state
Value+ Handbook
 Two-fold purpose: raising awareness
and providing know-how
 Value+ Model of Meaningful Patient
 Involvement
 Knowing
at each project stage
and understanding patients
and patient organisations to work
effectively together
Putting the Tools into Practice
Real commitment to involving patients
Partnership with EPF / Value + tools
Greater awareness among patients to get involved
Great receptiveness and know-how among project
promoters and innovators
Access to credible patient organisations ready to contribute
their unique expertise and know-how meaningfully
Advances to patient involvement in research practice over the next
decade :
 Establishing the effectiveness of patient research, involvement in
achieving health outcomes
Patients – equal and respected research partners
Increasing Patient Research education and training opportunities
Achieving greater support for Patient Research approaches among
funders and institutions.
More Information?
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Meaningful Patient Involvement in FP7 Research