Patient and Public Involvement (PPI) in research: Concept of a cross-indication patient advisory board in primary care - an example from Germany

Susanne Kersten, Judith Tillmann, Christine Kersting, Jana Isfort, Klaus Weckbecker, Julia Hülsmann, Achim Mortsiefer

Keywords: Patient and Public Involvement, PPI, Patient Advisory Board, Concept, Germany

Background:

To address patients’ care needs and facilitate patient-centred care, patient and public involvement (PPI) in research projects is strongly recommended; also in the field of general practice. In Germany, initial efforts are already being made to realise permanent PPI in general practice research by initiating cross-indication patient advisory boards.

Research questions:

How can a patient advisory board be established that represents the heterogeneous patient collective in general practice? What experiences have been made during implementation?

Method:

1. Literature: Screening of (inter-)national experiences/recommendations
2. Draft: purpose, group size, sampling method, inclusion/exclusion criteria, patients´ role (intensity of participation): Listener – Co-Thinker – Advisor – Partner – (final) Decision-maker.
3. (inter-)national Experts’ feedback and adaptation
4. Implementation: Recruitment facilitated by GPs, public postings and a local self-help organisation. By now the board consists of 12 persons (8 females) aged 36 to 78, suffering from different diseases representing the most common chronic diseases in Germany.
5. Continuous adaptation: Evaluation of the meetings and adaptation according to the patients’ feedback. The meetings take place twice a year (by now: 4 meetings)

Results:

The contributions of the patient advisory board have already had a direct influence on 3 ongoing projects in primary care:
a) Living will - expectations and requirements defined by the patients have significantly influenced the interview guides (Advisor)
b) chronic pain management - experiences on physician-patient communication under consideration of gender aspects (Co-Thinker), identification of topics for the needs analysis (Partner), Development intervention – participation-game (Partner)
c) Smoking cessation - co-development of the interview guide for patient interviews (Partner)
The most important aspects in participatory research are equal collaboration and feedback on how the patients' contribution influenced the research projects.

Conclusions:

Research projects can benefit from established advisory boards; furthermore, it offers advantages such as resource savings, well-established processes, expanded competencies and already established relationships of trust.

Points for discussion:

What experience do other European countries have with patient advisory boards?

What are your recommendations for improving our concept?

What other implementation experiences are you aware of?