5:20 - 5:40 pmSaturday, September 6
LK 120
E-Health and relational ethics: Patient and clinician accounts of using digital health technologies
LK 120
E-Health and relational ethics: Patient and clinician accounts of using digital health technologies
Research Associate, University of British Columbia
BackgroundE-Health refers to the raft of health technologies widely adopted and positioned as transformative for health/illness experiences and healthcare delivery. These technologies are seen to accelerate... Read more

Description

Background

E-Health refers to the raft of health technologies widely adopted and positioned as transformative for health/illness experiences and healthcare delivery. These technologies are seen to accelerate the emergence of the e-patient – empowered, engaged, enabled and equipped. But we know very little about emerging ethical issues associated with this shift regarding self-management and patient-clinician relationships. Our objectives are to:

·      Describe how e-Health is being used to assist self-management strategies in people with chronic illness;

·      Understand how e-Health is changing the patient-clinician relationship in chronic illness care;

·      Taking a relational approach, reveal the ethical issues to emerge regarding e-Health self-management and patient-clinician relationships.

 Methods

This 2-phase qualitative study is informed by phenomenology and a narrative approach, to examine the meanings, processes and context of e-health use for patients and clinicians. Focus groups (FG) were held with adult, English speaking participants, with arthritis and at least one other health condition, and clinicians with appropriate caseloads. Recruitment was via a range of online communications, and word of mouth. The recorded FG discussions were organized around 4 separate but overlapping 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. Analysis was iterative; constant comparisons were made between and within transcripts by at least 2 researchers, who annotated the transcripts using open coding and paper-based methods. Other team members discussed the emerging codes that were categorized. A relational ethics lens was applied, key categories amended and agreed upon by the wider team and predominant themes identified. At time of writing, we have started phase-2; 24 in-person interviews (12 patients and 12 clinicians recruited as above), in order to gain more in-depth understanding of our study aims and the emergent focus group themes.

 Results

(Phase 1- Focus Groups) 36 participants(18 patients, 18 clinicians) participated in 7 FG, 4 with patients and 3 with rehabilitation clinicians. We interviewed 4 clinicians who were unavailable for FGs. Patients and clinicians reported similar views of e-health, though balance of concerns and priorities varied. Predominant themes were associated with changing patient-clinician roles in terms of: 1) Shifting responsibilities (e.g. patients were compelled to prepare for consultations using a range of e-Health sources, clinicians were uncertain about how best to support emerging e-patients); 2) Changing notions of trustworthiness (e.g. patients trusted clinicians who discussed Internet information with them; 3) Collaborating (E-health sources such as monitoring/tracking devices and online information supported collaborative decision-making and partnerships; 4) Emerging burdens (information, new technologies, balancing time, pace of change could prove burdensome for patients and clinicians). We continue to examine these themes as field-work progresses.

Conclusions

As e-Health develops, patient-clinician relationships, roles and responsibilities are changing, revealing emerging key ethical issues. Our analysis suggests that patients appear more ‘ready’ than clinicians for this shift. Support is needed for both patients and clinicians to optimize provision of care and self-management while reducing the potential burdens.

Dr. Anne Townsend is a Research Associate at the Department of Occupational Science and Occupational Therapy, University of British Columbia. She gained her BA in Sociology and Educational Studies in 1989 at the University of Lancaster, UK, an MA in Women’s Studies at the University of Exeter, UK in 1993, and was awarded a Medical Research Council PhD in the School of Public Health Sciences at the University of Glasgow, Scotland in 2005. She was a lecturer in Sociology in the UK between 1991-1999. While undertaking her PhD she was Senior Head Warden at the University of Glasgow (head of pastoral care for the student resident population).

Her association with the University of British Columbia began in 2006 as a Post-Doctoral fellow in the Health Policy and Training Program at the Maurice Young Centre for Applied Ethics, which she completed in 2009. She has also taught an Introduction to Qualitative Methods and the Sociology of Health and Illness as an Instructor in the Department of Sociology. Her teaching also includes case-based learning/seminars in ethics to health care trainees.

Dr. Townsend is a qualitative researcher with academic activities in two main areas; the experience of chronic illness and health research ethics. Her work in chronic illness focuses on self-management and issues of identity, shared decision-making, medication use and concordance and consulting behaviour. Her work in ethics includes the ethics of qualitative research to inform an evidence base, the experience of being a health research subject and issues of relational autonomy in the patient/consumer-physician relationship. Her qualitative methodology expertise includes grounded theory, framework analysis and narrative approaches. More recently she has developed an interest in digital health and how they influence patient and physican roles, relationships and responsibilities.

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