14 Mar Patient access to data will bolster precision medicine, cancer moonshot, HHS chief DJ Patil says
The move to data-driven healthcare is spurring new applications and services to improve care delivery and patients’ ability to access and share their records.
The federal government is pursuing a fistful of bold visions to transform healthcare including the Precision Medicine Initiative and the National Cancer Moonshot, and for those to succeed patients are going to need the ability to access and share health data in new ways, according to three U.S. Department Health and Human Services officials.
“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,” wrote HHS CTO and Chief Data Scientist DJ Patil, Senior Advisor Claudia Williams and Precision Medicine Initiative project manager Stephanie Devaney.
The authors cited President Barack Obama’s Precision Medicine Initiative, an innovative approach that takes into account individual differences in people’s genes, environments, and lifestyles in treatment and research, and the National Cancer Moonshot, which leverages Big Data to find solutions to genetic abnormalities, as examples of data sharing to accelerate research and translate findings into new treatments.
HHS has been taking steps to enable the data sharing that PMI, the Cancer Moonshot, and key research projects will demand.
The agency recently issued guidance to clarify patient rights to access a variety of health information, including personal health records, the information in their health records, clinical laboratory test results, and genetic data. And earlier this month, 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.