By Joel Gurin and Katarina Rebello
The HHS Office of the Chief Technology Officer (CTO) and the the nonprofit Center for Open Data Enterprise (CODE) co-hosted a Roundtable on Data Sharing Policies, Data-Driven Solutions, and the Opioid Crisis in July 2018. CODE has just released its report on this event, which brought together over 70 experts from federal, state, and local government, the private sector, nonprofits, and academia, including winners from the December 2017 HHS Opioid Code-a-Thon.
The Roundtable was an opportunity to focus on health data sharing – a major priority for HHS – in the context of this pressing national public health emergency. Participants in the Roundtable came up with a number of recommendations that could facilitate data sharing to address the opioid crisis. Some of these recommendations could have broader benefits for health data sharing and data use overall. Recommendations drawn from the Roundtable include:
- Repeal 42 CFR Part 2 and protect substance abuse information under HIPAA requirements. Roundtable participants proposed repealing Title 42 of the Code of Federal Regulations (CFR) Part 2, which limits the use of data related to patients who abuse opioids and other substances, and instead relying on the Health Insurance Portability and Accountability Act (HIPAA) to protect patient privacy.
- Educate stakeholders on the potential for data sharing under HIPAA. HHS could develop additional resources to help assuage concerns about sharing and utilizing data under HIPAA.
- Establish standard data usage agreements. Standard Data Usage Agreements (DUAs) would facilitate successful data sharing between and within agencies, enabling more effective application of data to public health crises.
- Update the Model Vital Statistics Law (MVSL). Modernizing the MVSL would make it easier to link death records with data on opioid overdoses, and would improve interoperability between health records systems at the state and local level.
- Adopt common data standards. Common data standards could enable policymakers and researchers to integrate data from multiple sources and develop solutions to time-sensitive public health crises like the opioid crisis.
- Provide controlled access to sensitive public health data. Participants suggested developing a system of controlled access to sensitive public health data to encourage greater collaboration between government, clinical research organizations, and academic institutions in developing data-driven solutions to the opioid crisis.
- Generate a unique patient identifier for health data. Having a unique identifier for each patient would help practitioners deliver healthcare more effectively, and help researchers and policymakers develop better solutions to public health crises.
On behalf of CODE, it has been a privilege working with the HHS Office of the CTO on addressing this critical public health issue. The results of our Roundtable show how strongly the community of health data experts supports the need for better data sharing. We hope these recommendations are helpful to HHS in developing new data sharing strategies for the opioid crisis and public health overall.
Joel Gurin is President of the Center for Open Data Enterprise, where Katarina Rebello is Director of Programs. The Center thanks its Open Data Partner, PCORI, and its Open Data Supporters, Booz Allen Hamilton and IEEE, for supporting its work on this Roundtable.