Your data in your hands: Enabling access to health information

By DJ Patil, Claudia Williams, Stephanie Devaney

“I would like to think that if somebody does a test on me or my genes, that that’s mine.” — President Obama February 25, 2016

Ensuring that patients and providers can access data is a key part of the Administration’s effort to move our health care system toward one that delivers better care to patients, spends our dollars more wisely, and results in healthier people and communities. We are just beginning to see the power and potential of data-driven health care. Dramatic progress to expand health insurance and digitize healthcare is paving the way for a health care system that delivers the right care to the right patient when and where it is needed. When patients are engaged in research and voluntarily sharing their health data with the research community, the opportunities for new discoveries at the intersection of human biology, behavior, genetics, and data science are unlimited.

It’s not just providers and researchers who have access to new technology and data. It’s also patients. Increasingly, individuals are able to access their own digital health data and share it as they want with their family, clinicians, and researchers. This capability is critical for the types of research that can advance our understanding of disease and health. Both the Precision Medicine Initiative (PMI) launched by the President in January 2015 and the National Cancer Moonshot under the leadership of Vice President Biden will rely on people volunteering to share their data, while emphasizing privacy and data security, to harness the power of data to accelerate research and translate findings into new treatments. And just as importantly, participants should have the opportunity to learn from the researchers with whom they share their data, just as researchers are learning from them. Under PMI, participants will receive information about themselves as well as the findings of research studies using their data. According to a recent survey, 90 percent of people said that learning about their health as part of a medical study would motivate them to participate.

What progress have we made toward enabling patient access to data?

Access to your medical records, clinical tests, and genetic data. Over the last two months, the Department of Health and Human Services (HHS) has issued guidance to clarify that you have a right to access a variety of health information about yourself, including the information in your health records, clinical laboratory test results, and genetic data. And just last week, the Food and Drug Administration held a workshop with patients and providers to understand the best ways to return information that is usable, meaningful, and actionable.

You have a legal right to copies of your medical records; however, making sure you have them available at the click of a button requires technological solutions. We’ve worked hand-in-hand with the private sector and together, last week, the companies that provide 90 percent of electronic health records to hospitals nationwide pledged to improve the flow of data across health care settings, provide people with easy and secure access to their information, and adhere to federally recognized standards that assure that patients can access their own data. In addition, HHS announced new challenges to spur the development of apps that use open, standardized application programming interfaces (APIs) to help consumers aggregate their health information in one place that is under their control.

Through the Blue Button initiative, a public-private effort to expand patient access to their health information launched by this Administration, an estimated 150 million Americans now have the ability to access their health records online from health professionals, medical laboratories, retail pharmacy chains, and state immunization registries. More than three million veterans, service members, and Medicare beneficiaries have now accessed their personal health data more than 43 million times.

Choosing who gets your health data. You have the right to ask your providers to send your health information to a third party of your choice, including to a research study. At the Precision Medicine Initiative Summit that the President recently hosted at the White House, six of the major electronic health record vendors announced that they will pilot the use of standard ways (i.e., APIs) for individuals to access and contribute their data to research. In fact, you’ll be able to use these tools to participate in the National Institutes of Health (NIH) Precision Medicine Initiative Cohort (PMI Cohort), when it is launched. These actions will pave the way for the future the President outlined at the PMI Summit, “if I am sick and voluntarily I want to join with other people who have a similar disease to mine and donate our data to help accelerate cures, I’ve got to be able to…make sure that I can do that easily.”

Learning about yourself through the Precision Medicine Initiative. NIH has announced two new partnerships to help develop the first phase of the PMI Cohort. Vanderbilt University, in collaboration with advisors from Verily (formerly Google Life Sciences) will identify the best ways to engage participants in meaningful ways including how participants prefer to receive information about themselves. At the same time NIH will pilot test technology solutions to allow individuals to share their EHR data with the PMI Cohort once it is launched.

These are exciting steps toward ensuring individuals have access to their data, but we’re far from done. We will continue to advance the goals of patient access and look forward to hearing from you at our Twitter chat on Thursday, March 17th from 1 to 2 pm ET using the hashtag #PrecisionMedicine.

DJ Patil is Chief Data Scientist and Deputy Chief Technology Officer for Data Policy. Claudia Williams is a Senior Health and Health IT Advisor in the Office of Science and Technology Policy. Stephanie Devaney is Project Manager of the Precision Medicine Initiative