Abstract
BACKGROUND: Patient involvement is most common during the first phases of a research project. Despite good intentions, maintaining meaningful collaborations throughout the research process doesn't seem easy. Several training programmes for researchers and patients have been developed to stimulate continuous involvement. These are mostly one-time training sessions at the start of a project, for researchers and patients separately. We aimed to co-create a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects. METHODS: We developed a group training and peer-to-peer support programme lasting 2-3 years for 4-5 pairs of researchers and patient representatives working together on a research project. The programme took 30 h, spread over 6-8 meetings. The main goal was mutual and bi-directional learning and maintaining the collaboration throughout the research projects. From the start, the pairs were instructed to discuss communication, roles, expectations and responsibilities to prevent misunderstandings. The character of the meetings was intended to evolve from training and peer support into peer-group coaching and support for the whole group. The programme was not a fixed method, it was adjusted to the context and the needs of the participants. RESULTS: Thus far, the programme has been applied in 5 groups, with varying health topics and types of research. Patients' prior knowledge of research methods and researchers' experience with patient involvement varied within the groups. As a result of the side-by-side training power imbalances within pairs were reduced. All participants gained knowledge and experience in patient involvement. In subsequent group coaching sessions, they discussed issues and dilemmas on an equal footing. Most pairs found their way of working together, adapted to the wishes and capabilities of both partners. Differences between pairs were found to improve the discussions. CONCLUSIONS: We co-created a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects. The programme proved feasible for groups with different research types and health conditions. It fulfils an unmet need for researchers, patients and funders.