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Landscape of Trust: Health Data Frameworks

The rapid advancement of the health technology landscape relies heavily on patient data. Patient data from medical records and digital health apps can be leveraged to build new tools that can help diagnose disease, remotely monitor and track patients, and make groundbreaking discoveries that lead to new treatments and cures. Data-reliant entities, such as technology companies, have the most advanced capabilities to aggregate and analyze these data. But, because their activities fall outside of the traditional authority that governs health data privacy, their participation carries substantial implications for how patient data are collected and used.

The Pew Research Center, which publishes an annual survey to measure social trust, defines trust as a “belief in the honesty, integrity, and reliability of others—a ‘faith in people.’" The 2022 annual Edelman Trust Barometer found that distrust is the default for the majority of people. Fifty-nine percent of respondents indicate they tend to distrust until they see evidence that something is trustworthy versus a tendency to trust until they see evidence that something is untrustworthy. According to a poll of 2,200 adults across the country, fewer than three in five Americans trust the US health-care system. Further trust in the scientific, community has eroded since this tracking began in November 2020.

To move toward a system that patients trust, we must paint a clear picture of the desired system. In late 2020, FasterCures brought together experts who work with patient data in various settings to outline key elements of a trusted system. Part of the work was to envision the aspects needed to establish trust. Experts identified three foundational components of trust. For this report, we focus on one of the elements: the need to create strong and clear protections for patient data. The other two elements—ensuring that patients reap benefits from contributing their data and creating safe platforms and spaces for peer groups— are also crucial and will be addressed in our ongoing work.