Background Patient participation in research and in development of interventions has become a hot topic. Research on health beliefs of stakeholders shows that patients do have other views on health and well-being than health professionals without any experience of a chronic condition themselves (Ubel 2003, Huber 2014). Additionally, including the patients' perspective in research is a necessary condition for reaching patient-related-outcomes (De Wit 2014). Moreover, active involvement of patients is a critical factor for the actual use of an intervention in healthcare (Van Gemert-Pijnen 2011). Thus, including the patients' perspective has significant value. EULAR recommendations aim to stimulate the collaboration with patient (research) partners. Sharing examples may help both patients as health professionals to undertake these valued steps.
Objectives To share experiences of the collaboration between patient research partners and health professionals in building an online self-management training, and in developing the framework and outcome measures of research on the efficacy of the intervention.
Methods Patient partners and health professionals formed a research team who collaborated in all stages of development and research. The team conducted online focus groups among adult patients, a card sorting task and cluster analyses, all focusing on patients' needs and preferences. Results of this study were used to develop the content and structure of the online intervention.
Results Throughout the process experiences and perspectives of patients were used to guide the development and research. Consequently, the results yielded in an online expert-patient guided intervention, tailored to the needs, life, disease stage, and goals of the patient. Hence, the framework of research is customized to these results. In sustaining constructive collaboration in development and research, we found it important to be clear about expectations and roles of all involved in the research team.
Conclusions The involvement of patients had major influences on input, the details of the intervention, the framework of research including outcome measures customized to individual needs. To secure collaboration agreement about the roles and (load-taking) capacities of each research partner is essential. Concurrently, it is important to be clear about expectations, responsibilities, and ways of communication between all involved. Including patients in the development of interventions and research benefits all stakeholders and the product that results from the collaboration.
Gemert-Pijnen, J. E. van, Nijland, N., et al. (2011). A holistic framework to improve the uptake and impact of eHealth technologies. Journal of medical Internet research, 13(4).
Huber, M. A. S. (2014). Towards a new, dynamic concept of health: Its operationalisation and use in public health and healthcare and in evaluating health effects of food.
Ubel, P. A., Loewenstein, G., & Jepson, C. (2003). Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Quality of life Research, 12(6), 599–607.
Wit, M. P. de (2014). Patient participation in rheumatology research: A four level responsive evaluation.
Disclosure of Interest None declared