Representativeness of a digitally engaged population and a patient organisation population with rheumatoid arthritis and their willingness to participate in research: a cross-sectional study.

Ruth Costello,Clare Jacklin,John McBeth,William G Dixon,Matthew Jameson Evans

doi:10.1136/rmdopen-2018-000664

Abstract

ObjectivesTo describe (1) the representativeness of (a) users of an online health community (HealthUnlocked.com (HU)) with rheumatoid arthritis (RA) and (b) paid members of an RA patient organisation, the National Rheumatoid Arthritis Society (NRAS), compared with the general RA population; and (2) the willingness of HU users with RA to participate in types of research (surveys, use of an app or activity tracker, and trials).MethodsA pop-up survey was embedded on HU to determine the characteristics of users and their willingness to participate in research. An anonymous data set of NRAS member characteristics was provided by the NRAS (N=2044). To represent the general RA population, characteristics of people with RA were identified from the Clinical Practice Research Datalink (CPRD) (N=20 594). Cross-sectional comparisons were made across the three groups.ResultsCompared with CPRD, HU respondents (n=615) were significantly younger (49% aged below 55 years compared with 23% of CPRD patients), significantly more deprived (21% in the most deprived Townsend quintile compared with 12% of CPRD patients) and had more recent disease, with 62% diagnosed between 2010 and 2016 compared with 37% of CPRD patients. NRAS members were more similar to the CPRD, but significantly under-represented those aged 75 years or over and over-represented those aged 55–75 years compared with the CPRD. High proportions of HU users were willing to participate in future research of all types.ConclusionsNRAS members were broadly representative of the general RA population. HU users were younger, more deprived and more recently diagnosed. HU users were willing to participate in most types of research.

Highlights

Large population studies often require significant numbers of participants to generate enough statistical power
The aims of this study were to describe (1) the representativeness of paid members of a patient organisation with prevalent rheumatoid arthritis (RA) and users of an online health community (OHC) with RA when compared with the general RA population, and (2) the types of studies that OHC users with RA would participate in. Design This cross-sectional study compared the characteristics of adults with RA from the National Rheumatoid Arthritis Society (NRAS) members who had paid for membership and visitors to the NRAS community group on HealthUnlocked.com (HU) with adults with RA identified from the Clinical Practice Research Datalink (CPRD), a database of anonymised UK primary care electronic medical records
Patient organisation population The NRAS is a patient organisation for people living with RA

Summary

Introduction

Large population studies often require significant numbers of participants to generate enough statistical power. This often requires multisite recruitment through rheumatology departments. A study of trials conducted in 2002–2008 found only 55% recruited to their prespecified sample size.[1] This leads to an underpowered study and possible inconclusive results. Study recruitment may be improved in both numbers and efficiency by recruiting patients directly. This may be coordinated via patient organisations or, as patients are increasingly online,[2] through the internet.

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