Background Patients with chronic diseases often have to conduct conversations that are associated with their disease, either to pursue their own interests or to justify their personal restrictions. The ability to communicate with confidence may be considered a precondition for social participation. Because social participation is one of the key concerns of the Deutsche Rheuma-Liga (DRL), the DRL has funded a research project for enhancing the communication skills of people suffering from rheumatic diseases. The project involved key participation by DRL's- patient research partners (PRPs), who related their own communication limitations as well as providing input to the design of a novel programme of communication skill training. The experience gained and the various contributions of the PRPs will be presented.
Objectives The aim of the project was the inclusion of PRPs in a scientific study that identifies, and subsequently seeks to enhance, those areas of life in which patients with rheumatic diseases experience the most problems during conversations.
Methods PRPs were trained during a two-day interactive training course based on EULAR recommendations. Obstacles during disease-associated conversations were identified via an online questionnaire. The results of this analysis fed into a new programme of communication skills training.
Results The PRPs felt they were being treated on equal terms and that they were being taken seriously by the researchers. Their proposals were implemented by the researchers, if possible, and they took part in all substantial meetings of the research project. The PRPs were actively involved in: i) the preparation of the information leaflet describing the online questionnaire; ii) the preparation of the online questionnaire itself; iii) designing the course of the interviews; iv) disseminating information about the study. Thereafter, the PRPs participated in: v) designing the various modules of the communication skill training; vi) the training handbook's preparation; vii) the information leaflets promoting and describing the skill training. Moreover, the PRPs will operate the first test runs of the skill training. Altogether, the participation in the research project was acclaimed as interesting and enriching by the PRPs.
Conclusions The implementation of the patient's perspective through inclusion of the PRPs was successful and gave important impetus. The usefulness and effectivity of the new training programme will be evaluated in a future randomised, controlled trial.
Acknowledgement The authors wish to thank the following patient research partners for participating in the study: R. Choijnacki, U. Garske and I. Kimmerle. We also thank the following investigators: J. Lamprecht, W. Mau, M. Schlöffel and A. Schöpf.
Disclosure of Interest None declared