Background/Purpose: E-Health can potentially transform and enhance health care delivery and empower patients. E-health includes a spectrum of digital health services and information communicated through the Internet and mobile technologies. As digital tools are embraced it is vital to examine emerging ethical issues. We apply a relational ethics lens to situations arising in e-health for patients with arthritis and their health care providers (HCP). Relational ethics emphasizes context, interdependence and relationships that facilitate or constrain meaningful self-direction. The prevalence of comorbidities in patients with arthritis amplifies the complexity of managing diseases concurrently for both patients and HCP. We explore their perspectives on the use of e-health technologies and how e-health use impacts the patient-physician relationship, and in so doing make ethical issues explicit.

Methods: This is Phase 1 of a 2-phase qualitative focus group (FG)/interview study, informed by narrative and phenomenology to understand the ‘lived experience’ of e-health use. Eligible participants were: adults with multi-morbidity including arthritis and HCP with relevant caseloads, recruited via online ads, notices, and word of mouth. The FG guides were consistent across groups and organized around 4 areas: 1) E-health tools/devices; 2) descriptions of e-health experiences; 3) impact of e-health use on actions and decisions including patient-provider consultations; 4) a recap to check alignment and range of views. An iterative, constant comparative analysis began with independent open coding of transcribed data by at least 2 researchers; other team members discussed and clustered emerging codes; an ethical lens was then applied to clusters and key categories were identified and agreed upon by the wider team.

Results: 36 participants (18 patients, 18 HCPs) participated in 7 FG, 4 with patients and 3 with rehabilitation professionals and physicians (HCP). We interviewed 4 HCPs who were unable to attend a FG. Patients and HCP expressed similar views about e-health, though examples, emphasis and priorities varied. Predominant themes were: 1) Changing notions of trust (e.g. privacy was a concern but less so than expected; 2) Responsibilities (e.g. patients used e-health for tasks to prepare for consultations; 3) Partnerships (e.g. concordance); 4) Burden (e.g. searching for relevant information was time consuming and could be overwhelming.

Conclusion: There was evidence that fundamental aspects of patient-HCP relationships are shifting. It is critical to make the ethical issues in e-health explicit, as we track the transition towards empowered patients and receptive HCPs.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/exploring-e-health-ethics-and-multi-morbidity-a-qualitative-study-of-patient-and-clinician-experiences-using-digital-media-for-health-purposes/