Meaningful Patient Involvement

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Meaningful Patient Involvement In FP7 Research
Nicola Bedlington
Open Information Day 8 June 2010
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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

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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

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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
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• 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

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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
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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

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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

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Value Handbook

• 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

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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

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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.

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More Information?

• www.eu-patient.eu
• info_at_eu-patient.eu