Patients

Patients are one of the most important stakeholder groups when it comes to health data sharing. Sharing their health data can contribute to research on rare diseases, expand the possibilities of population health strategies, and more. However, the privacy of patient health data must be protected and their data must be used appropriately. Explore the materials below for more information.

Actionable Opportunities

Privacy

Assess a Genetic Project’s Privacy

Evaluate a genomic research project’s privacy and security practices

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Privacy

Understand Privacy Safeguards in Clinical Research

Understand how your privacy and confidentiality will be impacted by participating in clinical research

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Privacy

Review the Privacy of Your Wearable

Evaluate the security and privacy risks of the wearable product you are considering buying

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Data Access

Access Your Electronic Health Records

Learn how to request and receive access to your electronic health records

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