Background Patient participation is known in the field of rheumatology research and is becoming more customary. The patient perspective can improve the care and line specific needs of the patient to the delivered care.Recently, ourRheumatology department within the Maasstad Hospital introduced the Value Based Health Care principle in order to optimize the current healthcare system. We thought to measure the value for patients we should let them participate in the project and asked them about what is of value for them and what are there goals. A good reason to start with a patient panel.
Objectives For this reason we aimed to create a patient panel of rheumatology patients that are well informed and prepared to actively cooperate and participate in research, and co-design novel healthcare strategies.
Methods Staff members (e.g. doctors and nurses) were asked to nominate patients that are expected to actively participate in the panel. Nominated patients were verbally approached and asked to participate. After mutual agreement a contract was signed were patients discretion was warranted, the capacity to handle confidential information was assessed and equality between members of the panel and staff was ensured. Enlargement of the panel is primarily staff-driven, but panel members are also invited to actively recruit other rheumatology patients.
Results The initial enrolment period lasted for six months. Thereafter, meetings were organized were discussion were held on various themes such as goals and value for rheumatology patients. Additionally, a focus group of rheumatoid arthritis (RA) patients was assembled to evaluate a PROMs measurement tool. To date, a number of four panel discussion have been held. Currently, our patient panel consists of 54 patients with all kinds of rheumatic diseases. Their demographic and clinical data are presented in Table 1.
Our panel has been asked to participate in other (hospital-wide) programmes including the development and evaluation of a patient portal. We organize about three meetings for the whole panel every year and arrange focus group meetings to discuss specific subjects.
Conclusions Panel members are very open and enthusiastic. Some quotes: “I'm happy to do something in return for the good care I receive.”, and “I want to promote participation in scientific research”. Deployment of patient participation for co-creating innovations alongside research is an asset these days to connect changes to patients perception.
In real live involving patient as an expert is not an effortless action for both patients and the expert care takers, it leads to satisfaction and an effective treatment.
Disclosure of Interest None declared