meaningful patient involvement in fp7 research nicola bedlington meaningful patient involvement in...
TRANSCRIPT
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
The presentation
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
European Patients’ Forum
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
Literature – Patient Involvement
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
Evidence from the project on Value+ on FP6 and FP7
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
Know-how in 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
Strengths of Patient Involvement
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+ Outcomes
Why Two-fold purpose: raising awareness
and providing know-how
What Value+ Model of Meaningful Patient
Involvement Involvement at each project stage Knowing and understanding patients
and patient organisations to work effectively together
Value+ Handbook
Real commitment to involving patients +
Partnership with EPF / Value + tools =
Greater awareness among patients to get involvedGreat receptiveness and know-how among project
promoters and innovatorsAccess to credible patient organisations ready to contribute
their unique expertise and know-how meaningfully
Putting the Tools into Practice
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.
Conclusions
