A State of California advisory committee’s action plan for precision medicine offers several recommendations, including exploring the feasibility of a California Patient Record that would give all Californians the ability to access their complete health record and the ability to contribute their own data and share their record with any provider or researcher.
The advisory committee was established in late 2017 by Gov. Jerry Brown to advance precision medicine in the state. After six meetings, two forums for public input, and consultation with more than two dozen experts in the various subfields of precision medicine, the committee published a report on Dec. 26, 2018, with recommendations to accelerate the transition from the current system of care to precision medicine.
The first recommendation, involving the concept of a California Patient Record, notes 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.” The committee also recommends protections for patients when they do share that data.
To better understand the impact of precison medicine on patient outcomes, the committee suggests beginning with a pilot project that integrates the various components needed for precision medicine (technology tools, data integration and sharing, research and clinical partnership, patient-centered care) within a defined population. “Piloting a precision medicine model of care for a high-needs population would serve the dual purposes of not only understanding precision medicine’s impact on patient outcomes, but also whether precision medicine can be a cost-effective model and reduce health disparities,” the report states.
The report warns that without implementing more structured changes in healthcare education and training programs, the vast majority of patients will not benefit from precision medicine. Currently, precision medicine exists to some degree in disease-specific areas — a cancer patient whose tumor is sequenced, which leads to a tailored treatment plan with sophisticated technology-enhanced monitoring, the report says, but few people are yet able to experience the comprehensive capabilities of precision medicine. The report highlight several opportunities to improve the education and training of professionals, noting that universities, licensing boards, accreditation councils and the Legislature will be important partners in making these changes.
Finally, the report calls it highly likely that precision medicine will result in increased healthcare spending—at least for some period of time. “Careful attention must be paid to understanding the evidence base for new treatments and therapies. At the same time, we must redouble our efforts to contain current spending that does not lead to better health outcomes,” the authors write. “Precision medicine-based care can only be sustained by eliminating ineffective or less effective care.” The committee recommends continued work through the development of pilots, and the appointment of a commission to delve more deeply into cost issues.
