Welcome to the Behavioral Health Data Sharing Toolkit!
Efforts to ease the sharing of data to improve care also benefit from multiple national initiatives and projects. They include projects that address the legal and technical challenges associated with sharing data as well as efforts aimed at leveraging and sharing emerging best practices around data functionality and creating data cultures within and across systems, and more. We’ve compiled a list of resources, projects and organizations that we believe are doing important work that intersects and helps contextualize the issues surrounding the sharing of data.
Though these resources exist at the national level, many of these entities have projects underway that are formulated to assist local communities in their integration efforts, including data sharing, and lift up the best practices emerging for broader dissemination. Of course the landscape continues to evolve and change, so it’s important to check back frequently to these links to see other updates and new initiatives as they emerge.
“While true comprehension and appropriate interpretation of HIPAA requires effort (and often legal counsel), a very common pitfall is the natural impulse to assume understanding without investigation and confirmation. To avoid this requires that data sharing parties enter the conversation with a “how can we get to yes” mentality without immediately making hasty judgements about what the regulation does or does not allow. Also important is a willingness to consider – and then acknowledge – which challenges relate directly to HIPAA, and which have more to do with human errors of interpretation and workflow, organizational culture, or fear of potential consequences.” —The Universal Difficulty (but not Impossibility) of Sharing Data (blog post from ReThink Health)
Data Across Sectors in Health
As part of its multi-sector data and information system focus, the Robert Wood Johnson Foundation launched Data Across Sectors for Health (DASH). DASH aims to identify barriers, opportunities, promising practices and indicators of progress for multi-sector collaborations to connect information systems and share data for community health improvement. The DASH National Program Office (NPO), led by the Illinois Public Health Institute (IPHI) in partnership with the Michigan Public Health Institute (MPHI) and with support from the Foundation, is responsible for leading DASH.
Particularly helpful is a webinar, hosted by DASH in which presenters gave an overview of consent issues affecting communities (e.g. opt-in vs. opt-out, client engagement, etc.) and discussed questions and use cases from communities. This webinar includes a good resource sheet with links to other resources that also address and offer guidance on navigating confidentiality.
The Center for Health Care Strategies (CHCS)
The Center for Health Care Strategies (CHCS) is a nonprofit policy center dedicated to improving the health of low-income Americans. It works with state and federal agencies, health plans, providers, and consumer groups to develop innovative programs that better serve people with complex and high-cost health care needs.
CHCS has done a number of policy issue briefs and papers on behalf of CA through the support of BSCF that help to illuminate challenges and strategies to support behavioral health integration at the county/state/community systems level and on the SUD and MediCal waiver implementation. Included in the issue briefs are examples of promising practices by some CA counties.
Health Care Payment Learning & Action Network
The LAN’s mission is to accelerate the health care system’s transition to alternative payment models (APMs) by combining the innovation, power, and reach of the public and private sectors. The LAN’s goals are:
- Accelerated progress toward the achievement of 50% of all healthcare payment in the U.S. linked to quality and value through APMs by 2018
- Increased alignment of APM technical components within and across the public and private sectors
- Diffusion of cutting edge knowledge and promising practices on operationalizing APMs to accelerate the design, testing, and implementation of APMs
Data Sharing Requirements Initiative: Collaborative Approaches to Advance Data Sharing
As part of it’s work, the LAN has issued a report that addresses many of the complex issues associated with data sharing in collaboratives. The report, entitled Data Sharing Requirements Initiative: Collaborative Approaches to Advance Data Sharing is designed to help leaders of organizations, including providers, payers, and employers, who are working or wish to work in alternative payment models (APMs) to understand what information they will need from outside their organization and the processes involved in obtaining that information. Secondarily, this report will aid organizations, including third party entities, vendors, and policymakers, that support the data sources and data sharing processes to understand how best to enable their efforts. While the report is not a “how to” guide, as the specifics for each organization and region differ, it will be helpful in the strategic planning process to identify the APM functions that require data sharing, to assess current capacity and barriers, and to consider strategies within and across organizations to fill gaps in necessary data sharing functionality. There is a section on governance of data and some best practices for getting to transparency/data sharing across entities.
This collaborative, online community is a space to connect with “HealthDoers” across the country. Currently, HealthDoers are transforming local healthcare using a multi-stakeholder approach. However, they are often doing so without the insight of their peers. This community aims to accelerate healthcare improvement and reform by breaking down those silos of local information and serving as a resource hub so no member need “Start from Scratch” again.
Within this online community there are two relevant open “groups” that often feature the topic of data sharing, especially as it relates to improved care coordination across systems. For additional information see this helpful overview video.
HealthDoers Open Community is a learning community open to everyone in HealthDoers to share information, ask questions, find resources and meet like-minded doers. The goal of The Open Community is to connect individuals who seek to accelerate healthcare transformation by sharing best practices and shared goals, voicing challenges, and facilitating collaboration.
ALL In: Data for Community Health helps communities build capacity to address the social determinants of health through multi-sector data sharing collaborations. Data Across Sectors of Health (DASH – see above link) and the Community Health Peer Learning Program (CHP) founded All In to co-create a “network of networks” to share lessons learned and foster peer learning. Motivated by this opportunity to accelerate knowledge and progress, the BUILD Health Challenge and The Colorado Health Foundation have joined this work. Collectively, we now reflect the efforts and insights from 50 community collaborations across the country.
SAMHSA-HRSA Center for Integration (CIHS)
The CIHS promotes the development of integrated primary and behavioral health services to better address the needs of individuals with mental health and substance use conditions, whether seen in behavioral health or primary care provider settings. Included among the many topics covered on the CIHS website are previous webinars and issue briefs specifically related to confidentiality and the sharing of behavioral health data.
The Scattergood Foundation’s vision is to “be Thomas Scattergood” for the twenty-first century, seeking opportunities for productive dialogue and learning within the behavioral health field; and activating leadership and collaborative endeavors by awarding targeted grants to address important behavioral health needs in innovative ways. There website contains a number of useful resources and papers. One in particular addressing data sharing and privacy is:
“Privacy and Liberty: An Opportunity to Save Lives.” This is a policy paper that tackles the philosophical and real barriers of balancing the right to privacy, the cost of untreated mental illnesses and substance use and liberty. It offers a historical context on the development of privacy protection policies and some helpful contextualization of why confidentiality/privacy is such an emotionally charged issue for those on the seriously ill end of the continuum and the tension it creates with providers, families, and others who feel the need to disclose/act to address untreated conditions that could lead to serious consequences for society/individuals.
ReThink Health is a virtual community of changemakers that believes that by thinking differently and working together, we can remake our troubled health system into one that is centered on the well-being and productivity of our people, the vibrancy of our communities, and the prosperity of our nation. This includes the delivery of optimal, affordable, and accessible care. We also believe that the most promising way forward will spring from creative, concerted, and collaborative efforts in regions across the country, where residents and other system stakeholders dare to find and fulfill their shared aspirations.
ReThink Health awakens changemakers to what is possible. We spur big-picture thinking that allows leaders to step outside their own frames of reference. This lets them better see how the various parts of the system interact in unexpected ways and determine how and where they can exert influence. We do this by deeply understanding their challenges, listening to diverse voices, and working together to harness the information, insights, and actions needed to overcome entrenched beliefs and disrupt the status quo.
Their blog post “The Universal Difficulty (but not Impossibility) of Sharing Data” is particularly relevant for those looking at sharing data in the context of multi-sector partnerships/collaborations.