Since President Obama’s State of the Union address in January, much has been said about precision medicine. And, rightly so. The ability to treat common and rare diseases based on genomic and patient data is showing incredible promise. However, the medical community agrees that significant changes need to be made to federal healthcare policies and, in some cases, patients’ understanding of the benefits of sharing personal data, in order for the movement to be more successful.
Health IT Now, a coalition of patient groups, provider organizations, employers, and payers, and the Center for Data Innovation, a think tank studying the intersection of data, technology, and public policy, released a white paper that outlines three recommendations for policymakers who wish to take precision medicine to the next level. While they appear to be simple on the surface, it will literally take a nation to move things forward.
According to the white paper, here are three recommendations:
- Improve interoperability and data sharing. Stronger federal requirements are needed to ensure that genomic and other health data can be retrieved and compared across health record systems. Bottom-up, patient-driven reforms, such as giving patients (and their providers) a right to access and share interoperable health data, would incentivize standard setting and save lives.
- Engage patients. The public and private sectors share an interest in raising the tone of discourse on the role that genomics and other big-data applications might play in revolutionizing our expensive and underperforming health system. As the true customers of health care, consumers—especially patients desperately waiting for breakthrough cures—must be brought into this dialogue.
- Re-think privacy law. The strict privacy requirements of the Health Information Portability and Accountability Act (HIPAA) and complementary federal and state laws, including the Common Rule, present formidable obstacles to realizing the potential of genomic medicine. It is time to reassess the costs and benefits of these policies in light of recent scientific and technical advances, and to consider less burdensome models for protecting privacy.
If your organization is interested in implementing these recommendations, Perficient can help. Our precision medicine and connected health teams are made up of experts in these areas. Drop us a line to learn more.