title: eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients' and Health Care Providers' Use of Health-Related Internet Information.
abstract: BACKGROUND
  The rapid explosion in online digital health resources is seen as transformational, accelerating the shift from traditionally passive patients to patients as partners and altering the patient-health care professional (HCP) relationship. Patients with chronic conditions are increasingly engaged, enabled, and empowered to be partners in their care and encouraged to take responsibility for managing their conditions with HCP support.
  
  
  OBJECTIVE
  In this paper, we focus on patients' and HCPs' use of health-related Internet information and how it influences the patient-HCP relationship. In particular, we examine the challenges emerging in medical encounters as roles and relationships shift and apply a conceptual framework of relational ethics to examine explicit and nuanced ethical dimensions emerging in patient-HCP interactions as both parties make increased use of health-related Internet information.
  
  
  METHODS
  We purposively sampled patients and HCPs in British Columbia, Canada, to participate in focus groups. To be eligible, patients self-reported a diagnosis of arthritis and at least one other chronic health condition; HCPs reported a caseload with >25% of patients with arthritis and multimorbidity. We used a semistructured, but flexible, discussion guide. All discussions were audiotaped and transcribed verbatim. Elements of grounded theory guided our constant comparison thematic analytic approach. Analysis was iterative. A relational ethics conceptual lens was applied to the data.
  
  
  RESULTS
  We recruited 32 participants (18 patients, 14 HCPs). They attended seven focus groups: four with patients and three with rehabilitation professionals and physicians. Predominant themes to emerge were how use of health-related Internet information fostered (1) changing roles, (2) patient-HCP partnerships, and (3) tensions and burdens for patients and HCPs.
  
  
  CONCLUSIONS
  Relational aspects such as mutual trust, uncertainty, and vulnerability are illuminated in patient-HCP interactions around health-related Internet information and the negotiated space of clinical encounters. New roles and associated responsibilities have key ethical dimensions that make clear the changes are fundamental and important to understand in ethical care. When faced with tensions and burdens around incorporating health-related Internet information as a resource in clinical encounters, participants described a particular ambivalence illustrating the fundamental changes being negotiated by both patients and HCPs.
authors.affiliation: Arthritis Research Canada, Richmond, BC, Canada. atownsen@exchange.ubc.ca.
authors.forename: Anne
authors.initials: A
authors.lastname: Townsend
authors.forename: Jenny
authors.initials: J
authors.lastname: Leese
authors.forename: Paul
authors.initials: P
authors.lastname: Adam
authors.forename: Michael
authors.initials: M
authors.lastname: McDonald
authors.forename: Linda C
authors.initials: LC
authors.lastname: Li
authors.forename: Sheila
authors.initials: S
authors.lastname: Kerr
authors.forename: Catherine L
authors.initials: CL
authors.lastname: Backman
mesh_terms: D000328:Adult; D000368:Aged; D001168:Arthritis; D001955:British Columbia; D002170:Canada; D002908:Chronic Disease; D015897:Comorbidity; D054626:Consumer Health Information / Q000706:statistics & numerical data*; D005260:Female; D017144:Focus Groups; D066296:Grounded Theory; D006282:Health Personnel; D006801:Humans; D020407:Internet; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009788:Occupational Therapy; D010358:Patient Participation; D059825:Physical Therapists; D011369:Professional-Patient Relations / Q000941:ethics*; D036301:Qualitative Research; D012219:Rheumatology; D057566:Self Report; D017216:Telemedicine / Q000941:ethics*; D035502:Trust; D035501:Uncertainty
keywords: arthritis; chronic illness; e-health; health-related Internet information; patient-HCP relationship; qualitative; relational ethics