Background: Rheumatic diseases are commonly managed at infrequent clinic visits. Collecting electronic patient generated health data (ePGHD), for example symptom tracking, and integrating into electronic health records (EHRs) has the potential to transform care delivery and patient outcomes, including decision-making, patient experience, disease activity, and symptom burden [1]. This can assist clinicians to identify real-time changes in disease activity and capture symptoms that may otherwise have been missed [2]. However, the uptake of digital health innovations is not distributed evenly across different patient groups. This presents the risk that digital innovations may perpetuate health inequalities, whereby groups already experiencing health inequalities are more likely to be excluded from their benefit [3]. Evidence is limited regarding the views and experiences of patients who choose not to engage in remote symptom tracking. The UK REMORA2 trial is a stepped wedge cluster-randomised trial testing the effectiveness of daily app-based integrated symptom tracking for patients with rheumatoid arthritis (RA), taking place across 16 hospital sites in Greater Manchester and Northwest London [4]. This paper reports on qualitative research within the context of the trial, exploring barriers to app-based remote symptom tracking in order to understand potential inequalities and how best to maximise digital inclusion.
Objectives: To identify barriers to uptake of app-based symptom tracking and identify ways to address these barriers.
Methods: Qualitative semi-structured interviews (n=24) were conducted by telephone with patients who were invited to, but declined, to participate in the trial (n=16), or who were allocated integrated symptom tracking but did not register on the REMORA app (n=8). Average interview length was 38 minutes (range 23-71 minutes). Interview participants met the eligibility criteria for the REMORA2 trial, such as owning a smartphone and being able to speak English. The trial received NHS ethics & HRA approval, and all participants provided informed consent. The interview guide explored participants’ symptom history of RA, their experiences of rheumatology care and other health services, their views about remote symptom tracking and wider patterns of digital technology use. Interviews were audio-recorded, transcribed verbatim and analysed thematically. Three coders, including one patient partner investigator, inductively coded a sample of transcripts to generate an initial code book which was refined through discussions with the wider trial and PPIE group. The code book was used to code remaining transcripts and develop themes related to barriers to digital inclusion with further iteration through ongoing team discussions.
Results: Participant characteristics: average age was 60.6 years (range 24-82 years), 66% participants were over 55 years; female (n=16), male (n=8); most participants were White British (n=13), with the rest from minority ethnic groups (n=7), Irish (n=3) or ethnicity not collected (n=1). The analysis generated insights into barriers across several themes. These included: [1] incongruence between symptom tracking and participants’ existing perspectives on illness and self-management, such as where symptom tracking served as a constant reminder of their illness; [2] technology barriers, including limited skill or confidence using new technology, incongruence with current approaches to engaging with digital technology, or physical difficulties using devices due RA symptoms; [3] perceived benefits and problems, such as limited awareness of the potential personal benefits to patients’ clinical consultations, and perceived high levels of effort to use the REMORA app, both regarding initial registration and daily symptom tracking.These barriers did not exist in isolation, and several were inter-weaving and exerted influence over one another. For example, the impact of RA symptoms mediated the perceived effort level that use of the app entailed. Barriers cut across both participant groups (i.e. those who declined to take part and those who did not register), though barriers related to using new technology were less prevalent with those who did not register.
Conclusion: These findings demonstrate that patients’ reasons for choosing not to use the REMORA app were multifaceted and complex, with a combination of related barriers present in each participant’s account. Some barriers may present greater opportunities for mitigation than others. Future research might focus on ways to prioritise and mitigate these barriers to uptake, to both support uptake for patient self-management and to reduce health inequalities.
REFERENCES: [1] Druce et al. Preparing to deliver a stepped wedge cluster-randomised trial to test the effectiveness of daily symptom tracking integrated into electronic health records for managing rheumatoid arthritis: a mixed- methods feasibility trial. BMC Rheumatology. 2024; [Preprint].
[2] Austin et al. Providing ‘the bigger picture’: benefits and feasibility of integrating remote monitoring from smartphones into the electronic health record. Rheumatology. 2020;59(2):367-378.
[3] Davies et al. Addressing the Digital Inverse Care Law in the Time of COVID-19: Potential for Digital Technology to Exacerbate or Mitigate Health Inequalities. J Med Internet Res. 2021;23(4).
[4] Van der Veer et al. Remote monitoring of rheumatoid arthritis (REMORA): study protocol for a stepped wedge cluster randomized trial and process evaluation of an integrated symptom tracking intervention. Trials. 2024;25:683.
Acknowledgements: Submitted on behalf of the REMORA2 team. The REMORA research programme is funded by the National Institute for Health and Care Research (NIHR) with a contribution from Versus Arthritis under NIHR’s Programme Grants for Applied Research scheme (grant reference number NIHR202030). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (