Panel: California needs better data integration for precision medicine
If the Golden State is to achieve a precision medicine-based healthcare system, it must eliminate barriers to leveraging data for the prevention, management and treatment of diseases.
That’s among the recommendations recently made by a state advisory committee, which was formed in 2017 by then-Gov. Jerry Brown to help improve health and healthcare in California through precision medicine.
“We believe that much better integration of various data sources is possible (including the social, economic and environmental data) and beneficial, and can be activated through state leadership,” according to the report from the Precision Medicine Advisory Committee.
Among the committee’s top recommendations is building secure data platforms to use genetic, environmental and other forms of health-related data to develop personalized diagnostics and treatments tailored to individual patients.
“We recommend exploring the feasibility of a California Patient Record that gives all Californians the ability to access their complete health record, with ability to contribute their own data and share their record with any provider or researcher,” adds the report. “We also recommend protections for patients when they do share that data. We believe this will be important in making precision medicine a reality for all Californians.”
The document includes policy and legislative recommendations in five areas: data security and data sharing; patient partnerships; education and workforce development; regulatory issues; as well as health economics.
In the area of data security and data sharing, the committee calls for the following actions:
- The California Office of Planning and Research (OPR) should create a public-private working group to establish standards for social determinants of health data collection and examine the feasibility of requiring health systems to gather and regularly report on SDOH.
- The state legislature should require vendors operating in California to provide application programming interfaces to allow health systems to provide broader patient access to comprehensive EHR data.
- OPR should convene public and private precision health and medicine stakeholders to create cross-institutional data sharing guidance.
“To bring the many benefits of precision health to patients will require strong partnerships to support innovation in healthcare and medicine,” says committee co-chair Kelsey Martin, MD, dean of UCLA’s David Geffen School of Medicine. “This collaboration—within institutions, across institutions, between care givers and patients, between public and private institutions and across communities—will help ensure that California leads the way in driving transformative change in healthcare to improve quality of life globally.”