Background Online technology has revolutionised the way in which people connect and share their experiences. It also brings new opportunities to engage patients in health and social care research through the use of an online research community platform (ORCP). For example, it can improve the accuracy and usefulness of information gathered about research priorities, and it can be used to understand behaviours and preferences. Given an increasing prevalence of long-term conditions including rheumatoid arthritis, online technology represents a novel route for participation and engagement in research.
Objectives To explore the benefits and limitations of an ORCP through understanding lived experiences of adults with rheumatoid arthritis.
Methods We used a purposive sampling approach to ensure variation of key attributes amongst people with rheumatoid arthritis. A total of eight individuals used the ORCP during the pilot study. Qualitative data were collected through online focus groups, conducted as semi-structured interviews and asynchronous threaded discussions. The study was conducted in line with fieldwork guidelines, and written informed consent was obtained.
Results The closed ORCP enabled a physically disconnected group to share their experiences of living with rheumatoid arthritis, describing the symptoms, diagnostic experience and support they received. In addition, participants shared their experiences and opinions about treatment delivery and adherence, the impact of rheumatoid arthritis, and the experiences of transitional care from paediatric to adult health services, where appropriate. Reasons and feeling about research participants and drug development processes were also discussed.
Conclusions Our pilot study provided important accounts from people living with rheumatoid arthritis, highlighting the substantial impact of the disease on their daily lives. The ORCP removed physical contact between the researcher and participants, the absence of which may enable a richer data collection. However, it also has its limitations, primarily because the researcher is less able to gauge participants' attitudes and concerns. ORCPs represent a novel route of data collection, enabling researchers to immerse themselves into a community of individuals, whether they be patients, carers or professionals.
Acknowledgements The authors would like to thank the individuals who contributed their thoughts and experiences to the pilot study.
Disclosure of Interest S. Stones Employee of: McCann Complete Medical., S. Bull Employee of: McCann Complete Medical., S. Becerra Employee of: McCann Complete Medical.