Background I developed RA (rheumatoid arthritis) when I was 27 years old. Soon after meeting my rheumatologist (in Stockholm), I was asked to participate in a research study. The study was to develop an internet-based programme on physical activity/exercise designed specifically to assist RA patients. The study was run by researchers at Karolinska Institutet and Uppsala University, Sweden.
I was a member of one of the six focus groups consisting of five people (all with RA).The focus groups met and discussed various ideas on important content in the future internet-based programme (1). The next step was to specify and create an application (app). To do this, one of the researchers appointed five researchers and specialists to work together with five RA patients (of which I was one) to specify the requirements of (co-design) the app. For this second phase of the study we met on 4 occasions. Each meeting was 4 to 8 hours. The objective of these meetings was for us to cooperate and decide everything about the app from the graphics and name to the content and what kind of RA-patient we wanted to reach with this app (2,3).
Objectives Sharing my experience of co-designing an internet based health service.
Methods Analyzing my perspective of my participation in co-design.
Result In the first phase (the focus groups) I found it fun and rewarding to meet other people with RA, sharing our experiences and learning how different we are in sickness and in attitudes to physical activity. Phase 2 (the cooperative meetings) provided me with the opportunity to learn from professionals about statistics and to share our different views. As a group we were reflective and engaged. It was very enjoyable. It was extremely difficult to solve the issue/address the fact that all people with RA are different and require customized programmes for physical activity and exercise. How to resolve this and still provide an app that would be useful for as many people with RA as possible was very challenging.
Conclusion Co-design is a powerful instrument to make sure patients are involved in their own healthcare. For future co-designing of applications for RA-patients I would suggest to specify the target group of RA individuals based of their physical condition and interest in physical activity to reduce all compromises and time.
Revenäs Å, Opava C, Åsenlöf P. Lead users' ideas on core features to support physical activity in rheumatoid arthritis: a first step in the development of an Internet service using participatory design. BMC Med Inform Decis Mak 2014;14(21)
Revenäs Å, Martin C, Opava H. C, et al. A Mobile Internet Service for Self-Management of Physical Activity in People with Rheumatoid Arthritis: Challenges in Advancing the Co-Design Process During the Requirements Specification Phase. JMIR Res Protoc 2015; 4(3):e111
Revenäs Å, Opava H. C, Martin C, et al. Development of a Web-Based and Mobile App to Support Self-management of Physical Activity in Individuals with Rheumatoid Arthritis: Results From the Second Step of a Co-Design Process. JMIR Res Protoc 2015;4(1):e22
Disclosure of Interest None declared