Presentation on theme: "Meaningful Patient Involvement In FP7 Research Nicola Bedlington Meaningful Patient Involvement In FP7 Research Nicola Bedlington Open Information Day."— Presentation transcript:
Meaningful Patient Involvement In FP7 Research Nicola Bedlington Meaningful Patient Involvement In FP7 Research Nicola Bedlington Open Information Day 8 June 2010 Open Information Day 8 June 2010
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 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 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
www.eu-patient.eu email@example.com More Information?
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