Sharing Health Data: The Why, the Will, and the Way Forward.

Book edited by Grossmann C, Chua PS, Ahmed M, et al. : “Sharing health data and information1 across stakeholder groups is the bedrock of a learning health system. As data and information are increasingly combined across various sources, their generative value to transform health, health care, and health equity increases significantly. Facilitating this potential is an escalating surge of digital technologies (i.e., cloud computing, broadband and wireless solutions, digital health technologies, and application programming interfaces [APIs]) that, with each successive generation, not only enhance data sharing, but also improve in their ability to preserve privacy and identify and mitigate cybersecurity risks. These technological advances, coupled with notable policy developments, new interoperability standards (particularly the Fast Healthcare Interoperability Resources [FHIR] standard), and the launch of innovative payment models within the last decade, have resulted in a greater recognition of the value of health data sharing among patients, providers, and researchers. Consequently, a number of data sharing collaborations are emerging across the health care ecosystem.

Unquestionably, the COVID-19 pandemic has had a catalytic effect on this trend. The criticality of swift data exchange became evident at the outset of the pandemic, when the scientific community sought answers about the novel SARS-CoV-2 virus and emerging disease. Then, as the crisis intensified, data sharing graduated from a research imperative to a societal one, with a clear need to urgently share and link data across multiple sectors and industries to curb the effects of the pandemic and prevent the next one.

In spite of these evolving attitudes toward data sharing and the ubiquity of data-sharing partnerships, barriers persist. The practice of health data sharing occurs unevenly, prominent in certain stakeholder communities while absent in others. A stark contrast is observed between the volume, speed, and frequency with which health data is aggregated and linked—oftentimes with non-traditional forms of health data—for marketing purposes, and the continuing challenges patients experience in contributing data to their own health records. In addition, there are varying levels of data sharing. Not all types of data are shared in the same manner and at the same level of granularity, creating a patchwork of information. As highlighted by the gaps observed in the haphazard and often inadequate sharing of race and ethnicity data during the pandemic, the consequences can be severe—impacting the allocation of much-needed resources and attention to marginalized communities. Therefore, it is important to recognize the value of data sharing in which stakeholder participation is equitable and comprehensive— not only for achieving a future ideal state in health care, but also for redressing long-standing inequities…(More)”

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