1. Value+: Meaningful Patient Involvement Diane Whitehouse Value+: Meaningful Patient Involvement Diane Whitehouse Open Information Day on FP7 Health Research Centre Borschette, Brussels June 8, 2010 Open Information Day on FP7 Health Research Centre Borschette, Brussels June 8, 2010

2.  European Patients’ Forum  Value+ outcomes  Meaningful patient involvement  Today’s context with reference to clinical trials  Examples of Value+ projects investigated  Concluding remarks Overview

3. European Patients’ Forum

4. Available tools:  enable patients to become more involved in EU funded projects including research projects  for project promoters and coordinators to acquire more skills to enable them to facilitate patient involvement in practice  policy recommendations link research project outcomes with patient-centred policy development  a comprehensive Directory of Patient Organisations in every EU member state Value+ Outcomes

5. “patients take an active role in activities or decisions that will have consequences for the patient community, because of their specific knowledge and relevant experience as patients. The involvement must be planned, appropriately resourced, carried out, and evaluated”. See http://www.eu- patient.eu/projects/valueplus/resource s/valueplus_resources.php Meaningful patient involvement

6.  Citizen-centred, patient-centred  Continuous, autonomous  Data are integrated, distributed, shared  “Teamhealth” “teamcare”: citizens, patients, informal carers, family, health care professionals  All citizens receiving care through choice  Consultation that is ubiquitous, seamless, collaborative  Care often received at home Adapted from a Institute for Prospective Studies study, 2008http://is.jrc.ec.europa.eu/pages/EAP/docu ments/D-32007.06.14-Scenarios4Health.pdfhttp://is.jrc.ec.europa.eu/pages/EAP/docu ments/D-32007.06.14-Scenarios4Health.pdf In today’s overall context (1)

7.  Ensure meaningful patient involvement across all aspects of clinical trials  Focus clinical trials on patients.  Enhance and improve the outcome of clinical trials.  Increase patients’ participation rates in clinical trials. In today’s overall context (2)

8.  Patients’ involvement in clinical trials improves several critical aspects of clinical trials research in relation to patients’: o Perspectives on ethics and risks/benefits o Expectations; o Adherence o Cost effectiveness o Patient and public confidence In today’s overall context (3)

9. Why  Raising awareness and providing know-how  To provide a useful guide for project coordinators What  Value+ Model of Meaningful Patient Involvement  Involvement at each project stage  Knowing patients and patient organisations for working with them Value+ Handbook

10. The Eurogenguide project gathered information about genetic testing, counselling and research across Europe, by involving patient organisations and reaching grassroots patients through an online survey. See www.eurogenguide.org.uk/ Examples of projects (1)

11. The Salut project developed Internet-based systems to improve diagnosis and services for eating disorders. Patients were involved in the process. Internet-based therapy is now available and in use. See www.salut- ed.org/index.php/ Example projects (2)

12.  Aim for growing meaningful involvement of patients  Explore potential for, and strength of, involvement in clinical trials in a more meaningful way  Increase involvement at the inception and planning stage, in the governance structures of project  Improve outcomes of clinical trials  Increase participation rates Conclusions - clinical trials

13. www.eu-patient.eu See initiatives and policy – Value+ For specific information on the Value+ project info@eu-patient.eu Value+ - more information?