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Abstract
Objectives To understand and report on the direct-to-consumer virtual care industry in Canada, focusing on how companies collect, use and value patient data.
Design Qualitative study using situational analysis methodology.
Setting Canadian for-profit virtual care industry.
Participants 18 individuals employed by or affiliated with the Canadian virtual care industry.
Methods Semistructured interviews were conducted between October 2021 and January 2022 and publicly available documents on websites of commercial virtual care platforms were retrieved. Analysis was informed by situational analysis, a constructivist grounded theory methodology, with a continuous and iterative process of data collection and analysis; theoretical sampling and creation of theoretical concepts to explain findings.
Results Participants described how companies in the virtual care industry highly valued patient data. Companies used data collected as patients accessed virtual care platforms and registered for services to generate revenue, often by marketing other products and services. In some cases, virtual care companies were funded by pharmaceutical companies to analyse data collected when patients interacted with a healthcare provider and adjust care pathways with the goal of increasing uptake of a drug or vaccine. Participants described these business practices as expected and appropriate, but some were concerned about patient privacy, industry influence over care and risks to marginalised communities. They described how patients may have agreed to these uses of their data because of high levels of trust in the Canadian health system, problematic consent processes and a lack of other options for care.
Conclusions Patients, healthcare providers and policy-makers should be aware that the direct-to-consumer virtual care industry in Canada highly values patient data and appears to view data as a revenue stream. The industry’s data handling practices of this sensitive information, in the context of providing a health service, have implications for patient privacy, autonomy and quality of care.
- Telemedicine
- Information technology
- QUALITATIVE RESEARCH
- MEDICAL ETHICS
- Organisation of health services
Data availability statement
Data are available on reasonable request. The study interview guide is available as online supplemental file. Other data are available on reasonable request. Interview transcripts are not available to protect participant privacy.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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Data availability statement
Data are available on reasonable request. The study interview guide is available as online supplemental file. Other data are available on reasonable request. Interview transcripts are not available to protect participant privacy.
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @sheryl_spithoff, @BJMcP, @RobynKRowe, @QuinnGrundy
Contributors SS, BM, RKR and QG conceived of and designed the study. LV and LM made substantial contributions to the acquisition of data and data analysis. SS wrote the initial draft and all other authors critically revised the manuscript. SS is responsible for the overall content of the study and is the study guarantor. All authors give final approval for the version to be published and agree to be accountable for all aspects of the work. The authors thank MH for his input into study design and the preliminary analysis and thank Women’s College Hospital Peer Support Writing Group for reviewing a draft of this manuscript and providing feedback.
Funding This project has been funded by the Office of the Privacy Commissioner of Canada (OPC); Sheryl Spithoff has a Clinician Scientist Award from the Department of Family and Community Medicine at the University of Toronto. RKR is the recipient of the Queen’s Research Opportunities Funds–Post-doctoral Fellowship Fund.
Disclaimer The views expressed herein are those of the authors and do not necessarily reflect those of the OPC.
Competing interests The authors do not have financial conflicts of interest with relevant non-profit or for-profit entities to report. SS is an unpaid member of a Scientific Advisory Committee for a non-profit research network and data repository affiliated with her academic institution.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.