In 2019, European Patients’ Forum (EPF) has actively engaged with patients to ensure meaningful patient involvement is in place, and patient preferences are on board especially when it comes to key outputs produced by the project partners.
At EPF, we believe that meaningful patient involvement is a “must have” approach in research projects. Meaningful patient involvement implies that patients take an active role in activities that impact them and the patient community in general. Their hands-on knowledge and personal experience are very valuable for the process that needs to be considered. For effective and meaningful patient involvement it is crucial to establish partnerships on equal terms among patient organisations, health professionals, carers’ association, industry, insurers, health managers, and authorities.
Patients´ experiential knowledge is valued: they are seen as genuine partners rather than “validators” and “approvers” of research results. Meaningful patient involvement is planned well in advance, “built-in” to the design, resourced, and its impact is beneficial to all project participants. Patients should not be used as a last resort: they should be involved from the very beginning and kept informed during the follow-up stages. Here is how we are striving to achieve this in COMPAR-EU in a nutshell.
How is meaningful patient involvement incorporated into the project?
This year, EPF initiated the process of identifying, summarizing and ‘translating’ key outputs produced within the project in order to adjust them and make them accessible and understandable for the patient community. This process is formally known as ‘adaptation’. To do this, EPF decided to set up a group of patients (a ‘patient panel’) that will be involved during the full duration of the project and take an active part in all stages of this adaptation process. The patient panel meets once a month (online teleconferences) and is a substantial asset to EPF’s work in the project. The way we selected the participants in the patient panel was mainly through our membership and our Youth Group. We also reached out to attendees in the Core Outcome Sets Consensus Building Workshop that took place in Berlin last year. As always, to capture all possible perspectives, we try to balance when it comes to country, background, chronic condition and scientific knowledge/expertise. During these webinars, valuable knowledge and ideas are exchanged among members that bring additional level of depth and tangibility to what is conducted in the project. Members of the patient panel not only question the methods used when developing the projects’ products, but also are actively involved in what follows next and, in the design, and implementation phases of COMPAR-EU.
As EPF´s Project Officer and EPF´s Youth Group Coordinator, Lyudmil Ninov is responsible for different EU research projects.
In COMPAR-EU, Lyudmil and his team at EPF ensure that patients´ views, gender and socio-economic dimensions are considered throughout the whole project.
What is planned in the future?
In 2020, EPF has planned very exciting activities, including (but not limited to): two face-to-face meetings of the patient panel, the production of lay summaries focused on what has been conducted by the project so far and re-occurring online webinars. During these webinars, creative ideas flow in the air and members of the panel can truly shape the way the final project product will look like. We plan to expand the patient panel as we would like to diversify the group of patients and patient representatives involved. If you are interested in joining – please get back to us – there are still available places!
After we have designed our first draft of the COMPAR-EU Platform, there will be dedicated sessions on the functionality and usability together with actual testing face-to-face meetings. All these activities will bring even more patient centeredness to COMPAR-EU and showcase the direct benefits of patient involvement.