Pushing for Behavioral Health Data Exchange

Behavioral health (BH) entities are left out in the cold when it comes to Meaningful Use (MU) incentives, but many argue that such data are critical to improving care and patient outcomes.

Despite the lack of federal funding, a growing movement is afoot to lay the groundwork for the electronic exchange of behavioral data. While additional regulatory safeguards are in place to protect sensitive BH and substance abuse data, federal agencies are re-examining whether these restrictions do more harm than good while conducting their own pilots to gauge the feasibility and benefits of exchange.

ONC-SAMHSA Pilot

When the American Recovery and Reinvestment Act of 2009 appropriated more than $19 billion for providers to adopt health IT, BH entities remained outside of the loop.

However, the Office of the National Coordinator for Health IT’s (ONC) strategic plan recognized the importance of integrating mental health data into primary care, as well as the need for better care coordination for individuals with mental health and substance abuse conditions.

ONC—along with the Substance Abuse and Mental Health Services Administration (SAMHSA)—conducted a joint pilot to demonstrate the feasibility of interstate exchange of electronic BH data using Direct. The health agencies worked with the BH Data Exchange Consortium, which included Alabama, Florida, Kentucky, Michigan, New Mexico, Nebraska and Iowa.

The pilot had to contend with laws that add a layer of protection to these sensitive data, such as state laws that provide specific privacy protections and federal law 42 CFR Part 2, which protects the confidentiality of certain information related to substance abuse treatment.

The consortium faced both technical and operational challenges, and states had to learn how to effectively get providers educated and fully involved in behavioral exchange. “It was a multi-year effort. The most important accomplishment of this was that we demonstrated that systems can talk to each other,” says John Rancourt, public health analyst in the office of care transformation at ONC.

Technical Challenges

In the pilot project, multiple successful exchanges of de-identified data were conducted between BH providers in Florida and Alabama. Exchange between the two states made sense, as patients living on the northern panhandle frequently traveled between them, says Gary Parker, current project manager of Alabama’s One Health Record, who had overseen Alabama’s participation in the pilot.

“Because it was a behavioral health project, we had a lot more buy-in,” he says. The stakeholder group he put together, including mental health centers and leading edge technology developers, understood the value of this type of service. “It wasn’t a hard sell.”

The agencies released the final report on the pilot’s findings in June 2014, but the pilot took place between 2011 and 2012, when Alabama was in the midst of implementing its health information exchange, says Parker. Also, at that time, technologies were relatively immature. EHRs could barely produce a continuity of care document, thus data were exchanged in a .pdf document attached to Direct messages so they could neither be consumed nor accidentally re-disclosed without patient consent.

To facilitate exchange, the states employed checklists for initiating or responding to requests for BH data. Consent laws in Florida and Alabama were similar—so that helped establish a trust agreement between the states. For both, “if you consent to service, part of that consent is sharing data for the betterment of patients,” he says. Provider directory databases also were updated on a regular basis.

The pilot generated some positive results: the state witnessed an uptick in the number of providers signing up to use Direct, and the state’s four patient-centered medical homes all got on board. “As a result of the project, value was demonstrated to them,” says Parker.

“One of the really important, big pictures for a lot of people concerned, is that we really hadn’t been able to exchange data. We demonstrated that this can be successful and is doable, and it’s really important for health information exchange, which is a big component of healthcare,” says Jodi Daniel, JD, MPH, ONC’s director of the Office of Policy Planning, of the pilot.

Data Segmentation for Privacy Project

ONC’s Standards & Interoperability Framework’s Data Segmentation for Privacy (DS4P) Project is conducting pilots so providers can segment BH and substance abuse treatment information within EHR platforms.

Six DS4P pilots have been launched, and developers like Netsmart and Jericho Systems have worked to develop standards and implementation practices to allow for the segmentation.

For example, a recent pilot with SAMHSA and the health department of Prince Georges County, Md., tested a tool called Consent2Share—which allows patients of multiple providers to create consent directives specifying who is authorized to exchange their data.

“We are very excited to show this is working in a day-to-day pilot program that you can share behavioral health information through the health information exchange using appropriate consent,” says Kathryn Wetherby, lead public health advisor at SAMHSA.

SAMHSA also has doled out expert grants to five states offering funding to implement screenings, brief interventions and referrals of treatment within the architecture of health information exchanges.

Nebraska HIE

Some efforts to implement systems that support the exchange of BH data struggled due to HIE sustainability issues.

The Electronic Behavioral Health Information Network (eBHIN) operates as a closed network within the Nebraska Health Information Initiative. However, funding troubles, high cost per user and failure of providers to use high-end functionalities contributed to the HIE’s demise, and it transitioned operations on Aug. 31.

“We have a model that required us to get to a statewide scale, but there wasn’t support in terms of the work we were doing. Without a subsidy, we had to look at how we were operating, and we reduced the complexity of the system,” says Wende Baker, MEd, eBHIN transition coordinator. “It’s been very informative in terms of what the market can currently bear.”

Data sharing still takes place, but in a much more simplified manner, she says. The HIE database now is deactivated, and instead an EHR centralized data repository drives standardized health data exchange. In addition to Direct secure messaging, records, C-CDA documents and aggregate reports can be exchanged. But under the new system, they’ve lost the ability to do longitudinal look-ups and other high-level functions, Baker says.

Within the eBHIN, written consent is required for provider disclosure for treatment purposes except in instances of emergency treatment. This differs from the HIE itself, which had adhered to an “opt out” model. At the point of care, providers can access a form or template for patients to indicate their consent.

“We worked with consumers and providers around trying to develop a model that still gave consumers choice about opt-in but could work within the exchange environment,” says Baker.

The project faced a number of challenges, specifically in handling privacy and security concerns, paying for the technical requirements that surpassed the initial investment, and the narrow payer reimbursement which limited stakeholder investment.

“Honestly, it’s not very scalable, it’s labor intensive,” she says. Consent was one major roadblock, especially as patients themselves may not be in a position to offer consent when in the throes of a mental health or substance abuse crisis.

“When they are entering services, there is a lot going on. You don’t want to take the mortgage approach to consent, you want it to be informed consent,” she says. “It’s more challenging in larger organizations.”

Despite these hurdles, lessons were learned. “We made strides in learning about communication challenges, understanding some of the ethical issues, challenges in the workforce itself and peoples’ ideas about access to information,” Baker says.

Changes in Sight?

Standards to facilitate exchange are developing, but the rules themselves may soon undergo a makeover.

SAMHSA recently proposed redefining the records covered under 42 CFR Part 2 so they reflect the type of substance abuse treatment service provided instead of whether the entity defines itself as a substance abuse service provider.

As more substance abuse treatment is taking place in general health and integrated care settings, this shift would allow greater exchange of information. 

Part 2 requirements currently apply to all records of a provider defined as specifically offering substance abuse services. Healthcare organizations unable to satisfy the Part 2 consent requirements—which is challenging for most because of the costly and cumbersome endeavor of segmenting such records within their EHRs—can simply exclude from exchange the records of that entity.

Under Part 2, a patient’s written consent must specify the individual or organization to which the disclosure is to be made—and it cannot include providers that may need to see the patient in the future.

Under SAMHSA’s proposed changes, consent can be broadened to include a more general description of the entity to which disclosure is to be made. Further, it can require patients to be given a list of organizations that may access their information and be notified regularly of changes to this list.

The agency entertained the proposed changes during a listening session in June. The event attracted 1,800 participants, and the agency has received more than 600 written comments on the changes, according to Kate Tipping, JD, public health advisor on the health IT team at SAMHSA. 

She declined to provide a timeline on acting on the proposal, but did say they are in the process of determining “next steps.”

Voluntary Certification

Meanwhile, the Health IT Policy Committee (HITPC) is forming recommendations for a voluntary certification program to help data flow between systems used by BH and substance abuse providers and traditional service entities.

The HITPC approved a recommendation from its Privacy and Security Tiger Team that MU Stage 3 requirements include Level 1 send and receive functionality in the BH providers’ voluntary certification program. BH EHRs must be able to control which recipients can receive Part 2-covered electronic documents, and recipient providers must request the capability to receive such information from vendors. The Tiger Team referred to senders and receivers moving along the scale as “glide paths.”

The voluntary recommendation would mean that providers receive the information in view only mode so it cannot get consumed by the EHR or unlawfully shared.

“The development of standards are really important not only around interoperability, but also the ability to develop outcomes related to evidence-based practices,” notes Baker. The certification would provide a “good housekeeping seal” as BH entities often do not have the resources to vet appropriate vendors.

Daniel from ONC says, at this time, the agency is considering the recommendations but has yet to act. “Stay tuned,” she says.

The Road to Better Outcomes

BH and substance abuse information are essential knowledge to help providers effectively care for patients.

“It’s critically important to leverage health IT to connect physical health data and behavioral health data,” says Wetherby of SAMHSA.

With EHR incentives not in the picture and reimbursement lacking, BH entities still have a long road ahead of them integrating into care coordination. But recent pilots, SAMHSA’s consideration of loosening 42 Part 2 rules, and HITPC’s push for at least some low level of exchange between BH and traditional providers, show that the sands are shifting.

This is all part of a grander vision to improve care.

“All of this health IT, all of these dollars we’re spending really is to remove disparities of care and improve outcomes,” says Parker.