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.

Q&A

What types of health data are protected? What types are not?

Why is my data needed in clinical or genomic research and what should I consider to participate?

How are digital health and genetic testing companies managing your data? How are they regulated?

How can I use my personal data to support my community during the fight against COVID-19?

Actionable Opportunities

Privacy

Assess a Genetic Project’s Privacy

Evaluate a genomic research project’s privacy and security practices

Privacy

Understand Privacy Safeguards in Clinical Research

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

Privacy

Review the Privacy of Your Wearable

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

Data Access

Access Your Electronic Health Records

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

Resources

Mozilla’s *Privacy Not Included Buyers Guide for Health & Exercise

All of Us Research Program

The Million Veterans Program

Clinical Trials Transformation Initiative on Informed Consent

Navigating the Genetic Nondiscrimination Act with FORCE