European Patients’ Forum
Value+ outcomes
Meaningful patient involvement
Today’s context with reference to clinical trials
Examples of Value+ projects investigated
Concluding remarks
Overview
European Patients’ Forum
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
“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/resources/valueplus_resources.php
Meaningful patient involvement
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, 2008
http://is.jrc.ec.europa.eu/pages/EAP/documents/D-32007.06.14-Scenarios4Health.pdf
In today’s overall context (1)
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)
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 effectivenesso Patient and public confidence
In today’s overall context (3)
Why Raising awareness and providing
know-how To provide a useful guide for project
coordinatorsWhat Value+ Model of Meaningful Patient
Involvement
Involvement at each project stage
Knowing patients and patient organisations for working with them
Value+ Handbook
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)
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)
Aim for growing meaningful involvement of patients Explore potential for, and strength of, involvement in clinical trials in a more meaningful wayIncrease involvement at the inception and planning stage, in the governance structures of project Improve outcomes of clinical trials Increase participation rates
Conclusions - clinical trials
www.eu-patient.euSee initiatives and
policy – Value+For specific
information on the Value+ project
Value+ - more information?