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eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients' and Health Care Providers' Use of Health-Related Internet Information.

Townsend A, Leese J, Adam P, McDonald M, Li LC, Kerr S, Backman CL - J. Med. Internet Res. (2015)

Bottom Line: 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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Arthritis Research Canada, Richmond, BC, Canada. atownsen@exchange.ubc.ca.

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.

No MeSH data available.


Related in: MedlinePlus

Online recruitment document.
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Related In: Results  -  Collection

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figure1: Online recruitment document.

Mentions: Being based at an arthritis research center influenced recruitment and feasibility of the study (Figure 1). Participants were recruited in two urban areas of British Columbia, Canada, between November 2012 and June 2013 for focus group discussions via online arthritis sites, for example, the Arthritis Research Center (ARC), the Arthritis Patient Advisory Board (APAB), Web and social media sites (Twitter and Facebook), posters in clinical settings, and word-of-mouth. All sessions were held in the greater Vancouver area except for one HCP group that was held in Victoria. Focus groups were held in community centers, health care centers or participants’ places of work. The University of British Columbia’s Behavioral Research Ethics Board granted approval. Participants gave written consent.


eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients' and Health Care Providers' Use of Health-Related Internet Information.

Townsend A, Leese J, Adam P, McDonald M, Li LC, Kerr S, Backman CL - J. Med. Internet Res. (2015)

Online recruitment document.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC4526955&req=5

figure1: Online recruitment document.
Mentions: Being based at an arthritis research center influenced recruitment and feasibility of the study (Figure 1). Participants were recruited in two urban areas of British Columbia, Canada, between November 2012 and June 2013 for focus group discussions via online arthritis sites, for example, the Arthritis Research Center (ARC), the Arthritis Patient Advisory Board (APAB), Web and social media sites (Twitter and Facebook), posters in clinical settings, and word-of-mouth. All sessions were held in the greater Vancouver area except for one HCP group that was held in Victoria. Focus groups were held in community centers, health care centers or participants’ places of work. The University of British Columbia’s Behavioral Research Ethics Board granted approval. Participants gave written consent.

Bottom Line: 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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Arthritis Research Canada, Richmond, BC, Canada. atownsen@exchange.ubc.ca.

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.

No MeSH data available.


Related in: MedlinePlus