Participatory research design in the RESPoNsE research practice network: the Patient Advisory Board
Background
The active engagement of patients and citizens is becoming increasingly important in research. The approaches and processes of engagement are as individual as the group to be involved itself.
RESPoNsE (Research Practice Network East) is one of a total of six general practice research networks funded throughout Germany by the Federal Ministry of Education and Research. RESPoNsE is a project of the Institutes of General Practice and Family Medicine of the Charité – Universitätsmedizin Berlin and the University Hospital in Jena, as well as participating general practices (GP) for the regions of Berlin, Brandenburg and Thuringia. It is funded for five years until the end of January 2025. The network combines practical with scientific expertise in order to answer relevant research questions for the care of GP patients and to structurally strengthen general medical research through the engagement of all involved stakeholders.
Implementation and objectives of engagement
In RESPoNsE, patient engagement is to become an integral part of the general medical research conducted within the research practice network. Therefore, a patient advisory board was established in spring 2022. The advisory board is composed of so-called lay patients in order to include the non-medical perspective in our research.
Interested parties were initially invited via a variety of channels, and preliminary telephone interviews were then held with them. Demographic and additional information (e.g. motives, previous experience, profession) was collected in a partially standardised manner. The main tasks in the first phase of establishing the advisory board are the co-development and piloting of study documents and the interpretation of study results. Within the project duration, one to two meetings are planned per year. Last but not least, we would like to improve the quality of our research, include the diverse and important perspectives of patients, and conduct research in line with needs and requirements.
Current status
After an initial meeting at the end of January 2022 with 18 interested parties, the first working meeting of the consolidated advisory board (16 members) took place online in summer 2022. Here, the contents of a patient questionnaire were discussed in detail as part of a planned quantitative survey. The work results from this first advisory board meeting have been directly incorporated into the implementation of the patient survey in primary care practices in November 2022. In addition, the patient advisory board was used to implement two focus groups. The second meeting for the joint discussion of initial results of the patient survey took place online in March 2023. The third meeting is planned as a face-to-face event for the fall of 2023.
Interim summary
Patient engagement is an increasingly important and fruitful component of research projects. An advisory board can provide the appropriate forum to actively include the important perspective of patients in the various phases of the research process. Although meetings could only take place online so far, a productive and appreciative exchange was given. At the same time, sufficient time and human resources are needed to enable continuous implementation. The participatory format of the patient advisory board has so far proven to be a well-implementable method within the RESPoNsE research practice network and echoes the "Patient and Public Involvement" approach. We find the participatory research design together with the patient advisory board to be an evolving process with added value for all involved.