How the commercial virtual care industry gathers, uses and values patient data: a Canadian qualitative study.

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.

Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty.

Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous communities and across diverse fields, including Network Sovereignty, Food Sovereignty, Energy Sovereignty, and Data Sovereignty. Indigenous Research Sovereignty draws in the sovereignty discourse of these initiatives to consider their applications to the broader research ecosystem. Our exploration of Indigenous Research Sovereignty, or Indigenous self-determination in the context of research activities, has been focused on the relationship between Indigenous Data Sovereignty and efforts to describe Indigenous Peoples' Rights in data.

The SEEDS of Indigenous population health data linkage.

INTRODUCTION: Globally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage. OBJECTIVES: Centering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data. METHODS: During the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data. RESULTS: The SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states. CONCLUSION: Each of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations.

Indigenous Peoples' Data During COVID-19: From External to Internal.

Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. Data are required for decision-making, planning, mitigation, surveillance, and monitoring the equity of responses. There are dual concerns about the availability and suppression of COVID-19 data; due to historic and ongoing racism and exclusion, publicly available data can be both beneficial and harmful. Systemic policies related to genocide and racism, and historic and ongoing marginalization, have led to limitations in quality, quantity, access, and use of Indigenous Peoples' COVID-19 data. Governments, non-profits, researchers, and other institutions must collaborate with Indigenous Peoples on their own terms to improve access to and use of data for effective public health responses to COVID-19.