Technical, Cultural, and Operational Barriers To Mental Health Data Sharing
About five percent of Americans suffer from severe mental illness, but mental health services around the country are plagued with low quality of care and access to mental health care is worse than access to other medical services. To make matters worse, mental health care providers and researchers have a more difficult time leveraging data to solve these problems than their counterparts in other medical fields, in part because sharing mental health and other behavioral data is subject to additional restrictions at the federal and state levels that exceed the general data sharing restrictions put forth in the Health Insurance Portability and Accountability Act (HIPAA). These restrictions create technical challenges to sharing mental health data and introduce uncertainty among providers that makes them less inclined to share this data. To ensure that people suffering from mental illness do not get left behind in the data-driven health care revolution, the Office of the National Coordinator for Health Information Technology (ONC) should incentivize providers to build technical capacity around sharing mental health data, as well as work to educate providers on compliance. In addition, state health departments should pilot behavioral data sharing programs that build off of recent successes in Florida and Alabama.
The first way to improve mental health data sharing is overcoming a significant technical barrier associated with data transmission. In addition to HIPAA restrictions that govern all personally identifiable health data sharing, behavioral information such as mental health data is subject to the federal regulation 42 CFR Part 2, which prevents health organizations from sharing identifiable patient data from federally-funded substance abuse programs without signed consent, even for treatment purposes. This additional layer of protections means that most electronic health record (EHR) systems cannot properly handle mental health data, because they cannot accommodate multiple kinds of security that apply to different kinds of data. The leading approach to this issue is a technical capability known as data segmentation, which allows EHRs to apply one level of security to generic health data and another to behavioral data. This technology is a relatively recent development and has not yet been widely adopted in EHR systems. ONC is currently considering including some basic technological measures that enable segmentation into its Meaningful Use incentive program, and per the recommendations of the Health IT Policy Committee, the agency should include these measures in the Meaningful Use Stage 3 guidelines for health care providers.
Another way to improve mental health data sharing is educating providers on the complexities of complying with federal regulations around sharing. This includes both providers who may be hesitant to share mental health data because of uncertainties associated with the regulations but also those who fear that their trading partners might misuse the data. If these providers are not confident that their mental health data sharing efforts will be compliant, they will be less likely to participate and patients with mental illnesses will be less likely to reap the benefits of shared data. To ensure that the aforementioned technical approaches to sharing mental health data do not go unused, it is critical for ONC to work with state health agencies to increase educational efforts in this area.
The final way to move toward better mental health data sharing is to conduct more pilot programs around sharing. One significant recent effort in this area was the Behavioral Health Data Exchange Consortium, convened by ONC to establish best practices around intra- and interstate behavioral health data sharing. That project concluded in 2014 with a successful pilot to share data between providers in Florida and Alabama. The states of Georgia, Louisiana, South Carolina, Michigan, West Virginia, and Wisconsin have since begun participating in follow-up efforts, but the dozens of states that have not begun to participate should strive to replicate the successes of Florida and Alabama in data sharing pilot projects in their own states.
Mental health patients deserve to reap the same benefits of data-driven health care, such as enhanced medical research and improved care coordination, that data sharing will deliver to patients with other conditions. However, without a concerted effort between ONC and state health agencies on technical, cultural, and operational fronts, these patients are at risk of being left behind.
Image: Hermann Rorschach.