[Patient and public involvement (PPI) in palliative care research]

Patient and public participation in health research is of increasing social importance. The participation of citizens (patients, their next or interested parties) is not yet structurally anchored in Germany. This manuscript aims to present and to discuss first experiences with patient and public involvement in two palliative care centers.

In two centers, a general patient and public involvement committee (Erlangen) and a project-associated patient and public involvement group (Munich) were founded. Strategies for recruitment of potential members (public lectures, personal contact, information on the website, leaflets) were developed and applied. Sociodemographic data and motivations were assessed using survey and personal communication. 18 months after foundation citizens were asked to give feedback on participation during personal meetings.

The 20 members of the PPI committee (14 female) are between 52 and 86 years old in Erlangen. The PPI group in Munich has 7 members (5 female). Motivations to contribute are, for example, gratefulness for the care of a relative or the wish to share occupational competencies for a good purpose. Voluntary participation took place by consulting the research teams. Consultation was, among others, performed in joint sessions with brainstorming, moderated group discussions, piloting and commenting interview guides, texts or website content. Participation improved the quality of study material and data assessment instruments. Citizens appreciated that they were able to gain new information and meet people from different fields. They partly wished there was a more detailed preparation and debriefing after joint meetings. The research teams did not quantify the considerable staff and time expenses.

The recruitment strategies used have proved successful, and the experiences so far indicate a positive impact of PPI on research in the field of palliative care. Research is needed to evaluate the resources required and the effect of PPI in palliative care. On a structural level, discussion of PPI as one specification of voluntary engagement in palliative care, centralized provision of general information on PPI in palliative care and the possibilities of exchange between PPI groups and researchers of different facilities, should take place.

There is a need for networking and exchange among researchers and citizens of different project groups with experience in PPI. An institutionalized provision of expertise would pave the way for PPI in palliative research.