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

info@eu-patient.eu

Value+ - more information?