Progress by Activity AreasLooking at the main activity areas this is what we have achieved so far:
Research: Assessment of the current practice and trends regarding patients’ involvement in EU supported health-related projects focussing on success factors and challenges.
The activities that were planned in order to achieve the first objective mainly focused upon gathering of information and data. This was needed in order to analyse the level of patients’ involvement in EU supported health-related projects.
A literature research on patient involvement was done to help us set the frame of the assessment of projects. Following this, we did a selection of EU co-funded health projects for the period 1998-2008. In order to have clear information on the level and quality of involvement of patients and patient organisations involved we contacted the organisations that had the coordination role and sent a questionnaire to the project coordinator and to a patient or patient representative. The questionnaire was sent to approximately 70 projects which were finished.
In order to have a better insight of some of the issues that were gathered from the questionnaires data we organised two focus groups with patients and representatives of patient organisations from a few European and national projects already completed. The focus of the first focus group was exploring what meaningful involvement means in concrete terms, the barriers, challenges, benefits and facilitators. During the second focus groups, the participants analysed and gave feedback on some draft material of the Toolkit for patients’ organisations, which is one of the tools we are developing.
Following this work we are currently working at the formulation of a few show-case examples of good practice in patient involvement. Moreover, the information gathered through this research and the focus groups will be translated into the various tools to be delivered by VALUE+.
Testing: Patients’ organisations involvement in current EU supported health related projects.
For this aspect of the work we contacted current projects to propose cooperation and finally eight of them expressed their interest in working with VALUE+. The purpose of this cooperation was to see how patients’ involvement in different stages and aspects of the projects was implemented and how this could be optimised and improved. We did that in a workshop bringing together the project coordinator and patient/patient representative of each project.
After analysing the involvement based on a framework looking at the project cycle and activities, thorough discussions took place on the challenges to address and the strong points to build on. Each project developed an action plan with some short and long term initiatives towards improving the participation of patients. For most participants it was the first time they had the opportunity to sit together and discuss this matter; they considered that a success in itself.
Tools: Developing resources and tools on patients’ meaningful involvement for different stakeholders.
VALUE+ Database: we are preparing project fiches for each project we identified in the initial search. For a number of them there will be also information about patient involvement, how it took place, what the benefits and the challenges were and some good practices.
VALUE+ Resource Kit for patient organisations: it is under development. Patients and patient representatives are contributing to its development giving feedback through a focus group and email exchanges. Further feedback will be gathered at the seminar for patient leaders in Sofia in September.
VALUE + Handbook for project leaders and project proposers: it is under development and it will be tested with project coordinators and leaders.
VALUE+ Policy Recommendations: they are in progress.
Events: Disseminating information and activating the current political commitment to patients’ involvement.
Seminar for patients’ leaders in Lithuania: The seminar took place in November 2008. For the report please go to Value+ Webpage section “Events”.
Seminar for patients’ leaders in Bulgaria: The seminar is scheduled for the 18-19 September. For the draft programme please go to Value+ Webpage section “Events”.
Final Conference: it will take place in Gothenburg on 9-10 December 2009 under the patronage of the Swedish Government. The preliminary programme will be soon available.
This section is updated on a regular base in order to provide the latest results and activities.