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’
Forum

Partnering with patient organisations – how EPF can help

Conclusions
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
EU
Literature – Patient Involvement

Considerable benefits of patient
involvement

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
settings

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
Why
 Two-fold purpose: raising awareness
and providing know-how
What
 Value+ Model of Meaningful Patient
Involvement
 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
Conclusions
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?
www.eu-patient.eu
info@eu-patient.eu