eHealth, Participatory Medicine, and Ethical Care: A Focus Group Study of Patients’ and Health Care Providers’ Use of Health-Related Internet Information
Open accessAbstract
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.
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Contradictory information could result in additional questions arising about health and trigger a seemingly endless cycle of information seeking.
“Contradictory information could result in additional questions arising about health and trigger a seemingly endless cycle of information seeking [38, 39].”
The internet was thought to be informative, but there was evidence that people had concerns about the quality of information available on the internet, with the belief it could be contradictory at times and should be seen as provisional.
“Essentially, the internet was thought to be informative, but there was evidence that people had concerns about the quality of the information available on the internet, with the belief it could be contradictory at times and should be seen as provisional [38].”
Searching for health information online demands time, energy, and physical effort, especially for those not as familiar with technology.
“Searching for health information online demands time, energy, and physical effort, especially for those not as familiar with technology [38, 39, 51].”
HCPs were viewed as expert guides who could aid navigation through the otherwise overwhelming quantities of health-related internet information.
“HCP’s were thus viewed as expert guides who could aid navigation through the otherwise overwhelming quantities of health-related internet information [38].”
Online self-diagnosis was seen as a way to help patients make the most of the short time in consultations so they know what questions to ask.
“It was also seen as a way to help them to make the most of the short time they have in consultations so they know what questions to ask [30, 38].”
Many HCPs agreed that it was important to show support to patients who used the internet for health information, but that such behaviours can bring associated tensions.
“Many HCP’s agreed that it was important to show support to patients who used the internet for health information, but that such behaviours can bring associated tensions [38].”
HCPs felt that patient preparation promoted more focused, effective, and efficient consultations.
“HCP’s also felt that patient preparation promoted more focused, effective, and efficient consultations [38].”
Enabling better communication with HCPs was one of several reasons why patients used the internet to explore health information.
“Many studies explained that enabling better communication with HCP’s was one of several reasons why patients used the internet to explore health information [27, 38, 40, 45].”
HCPs sometimes experience anxiety around internet-informed patients, and some may find information patients bring to consultations slightly outside their area of expertise.
“HCP’s do sometimes experience anxiety around internet-informed patients, and some may find some of the information patients bring to consultations, slightly outside their area of expertise [38].”
HCPs agreed on the importance of collaboration with and guidance for patients, though they struggled to find the time to do this efficiently.
“HCP’s agreed on the importance of collaboration with and guidance for patients, though they struggled to find the time to do this efficiently [38].”
People used information from the internet to become better informed about their health, to prepare for their consultation, to enable them to ask better questions and to help them better understand the information given to them by HCPs, thus helping to make consultations more productive for them.
“People used information from the internet to become better informed about their health, to prepare for their consultation, to enable them to ask better questions and to help them better understand the information given to them by HCP’s [30, 38] thus helping to make consultations more productive for them.”
When HCPs create an atmosphere that is open, this can encourage patients to discuss the information they have discovered; additionally the patient's perception of invading the role of the HCP or their embarrassment may be reduced, which, overall, can enhance the relationship between the patient and HCP.
“When HCP’s create an atmosphere that is open, this can encourage patients to discuss the information they have discovered; additionally the patient’s perception of invading the role of the HCP or their embarrassment may be reduced, which, overall, can enhance the relationship between the patient and HCP [28, 38].”
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- Authors
- Townsend, A., Leese, J., Adam, P., McDonald, M., Li, L. C., Kerr, S., & Backman, C. L.
- Affiliations
- University of British Columbia (CA)
- Vancouver Coastal Health (CA)
- Research Canada (CA)
- Corresponding author
- Townsend, Anne
- ORCID
- Venue
- Journal of Medical Internet Research
- Publisher
- JMIR Publications Inc.
- Published
- 2015-06-22
- Volume
- 17
- Issue
- 6
- Pages
- e155
- ISSN
- 1438-8871 (ISSN-L)
- PMC
- PMC4526955
- OpenAlex
- W1525997899
- Cited by
- 106
- References
- 57
- Citations by year
- 2026: 3 · 2025: 3 · 2024: 11 · 2023: 9 · 2022: 5 · 2021: 11 · 2020: 12 · 2019: 25 · 2018: 11 · 2017: 7 · 2016: 8 · 2015: 1
- FWCI
- 16.46
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Journal of Medical Internet Research (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Funders
- Canadian Institutes of Health Research (122907_1)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Keywords
- e-health, participatory medicine, physician-patient relationship, relational ethics, ethical care, patient empowerment, chronic disease, arthritis, multimorbidity, rehabilitation professionals, trust, uncertainty, vulnerability, ambivalence
- MeSH terms
- Adult, Aged, Arthritis, British Columbia, Canada, Chronic Disease, Female, Health Personnel, Humans, Longitudinal Studies, Male, Middle Aged, Occupational Therapy, Patient Participation, Professional-Patient Relations, Rheumatology, Comorbidity, Focus Groups, Telemedicine, Internet, Uncertainty, Trust, Qualitative Research, Consumer Health Information, Self Report, Physical Therapists, Grounded Theory
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