On 12 June, the Innovative Medicines Initiative (IMI) held an event for patients and professionals involved in current IMI-funded research projects.
The aim of the meeting was to learn more about patient input on IMI projects, and their impressions on the results coming out of the projects. IMI also hoped to provide these patients with information on what is being done in their respective disease areas.
Patients from the UBIOPRED advisory boards attended and presented their experiences of being involved in the project.
The European Commission is working on its next period’s policy documents for “Europe 2020”. This will start in January 2014. It will deal with aspects like “all inclusive”, collaboration and improved protection of citizens. The research programme Horizon 2020 is part of this. Horizon 2020 will be rather about societal issues, collaboration and contribution by all partners.
Also the future of IMI has been discussed within the framework of Horizon 2020 - as it seems there will be a new IMI joint initiative. One of the issues is about patient involvement, as mentioned in the original IMI policy document. Hence, IMI invited patients and their representatives, and scientists from academia and industry, to discuss “patient involvement” in the current projects, the best practices and how it can be improved. Several patient speakers representing Alzheimer’s disease, schizophrenia, autism, cancer, respiratory diseases, and rheumatoid arthritis shared their own experiences and expectations for research (needs & wishes). IMI presented the scientific background of the related IMI-funded projects.
For respiratory diseases (asthma and COPD) U-BIOPRED and PROactive were represented by three people with asthma (all involved in U-BIOPRED), one person with COPD and three partner members. Val Hudson (member of the U-BIOPRED Ethics Board) provided her patient’s perspective on patient involvement in U-BIOPRED. Pim de Boer (Lung Foundation Netherlands) provided the general aspects of patient involvement and scientific view. Main message from both presentations was that we all learned what patient involvement means and how to do it. There are still things to learn like improved and suitable communication methods and defining the roles and goals of patient participation from the beginning. Other things we learned are that research that is more adapted to patient needs and wishes, the collaboration and trust among the partners and brings back the passion into research.
General outcomes of the meeting providing advice to IMI are:
- building on trust, partnership, innovation and novelty that fits the purpose;
- more focus on research towards pathogenesis of diseases, early diagnosis but also finding therapies;
- fitting medicine-related research to the right medicine for the right patient in the right phase at the right dose and time;
- the need to focus on multimorbidities and age and gender-related aspects, and hence to focus on cross-over research across different diseases;
- take research into non-pharmacological interventions into account e.g. devoted to lifestyle interventions;
- the need to involve patients more and actively in research and research policy as well as research planning:
- the need to involve specific groups in research like children;
- involve other stakeholders including primary care physicians, regulatory authorities (like EMA), health insurance companies, and health technology assessment (in view of financial-economical aspects of therapies);
- list and emphasize the best practices of patient involvement (as we did for the IMI projects U-BIOPRED and PROactive, as is being done in EUPATI and will be done in e.g. EU-AIMS).
This was the first IMI meeting dedicated to patients. The meeting and its results will be evaluated and discussed in the IMI advisory board. We all hope that more meetings like this one will follow, that more projects will include patients as partners and not as tokenism. It is not a one method fits all experience, but a vivid process. Also for IMI this is a new experience as the meeting was rather disease oriented and might have better been organised across diseases.
As an advice to IMI we suggest that patients also have more input into the call selection for IMI, which comes from EFPIA at present. We should advocate together to EFPIA for involving more stakeholders in this process.