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Navigating Legal Parameters for Cross-Sector Data Collaboration
August 20, 2018

Navigating Legal Parameters for Cross-Sector Data Collaboration

The National Center for Complex Health and Social Needs, a new initiative of the Camden Coalition of Healthcare Providers, was created as a professional home for clinicians, healthcare leaders, social service service providers, researchers, public health officials, data scientists, policy makers, payers, consumer advocates, and others who are working in the emerging field of complex care. We are working toward better-integrated, more efficient care for the relatively small population with complex health and social needs, including necessities often considered "non-medical" such as addiction, housing, hunger, and mental health. The National Center for Complex Health and Social Needs is funded by AARP, The Atlantic Philanthropies, and the Robert Wood Johnson Foundation.
Written by Cortney Bruno, MSW; Abigail Fallen, RHIA; Teagan Kuruna, MPH; and Jacqueline Rodriguez, JD, of Camden Coalition of Healthcare Providers; and Anne Marie Jensen, BS, EMT-P, of San Diego Fire-Rescue Department, City of San Diego

Individuals with complex health and social needs interact frequently with multiple healthcare providers and social service agencies.1,2 Despite repeated contact with these systems, these individuals can continue to experience significant barriers to their health and well-being.3,4 Given their multisystem involvement, improving outcomes for this subset of the population requires care coordination and service integration, along with tailored programming aimed at addressing social barriers to wellness.2,4

To address the needs of these individuals, providers first need to know who they are. Integrating data from multiple sectors, such as social services, education, criminal justice, and healthcare, can help providers identify individuals who are facing multisector barriers to wellness. The fuller picture provided by cross-sector data can illuminate a person’s health and nonhealth needs, help improve communication among providers within and across sectors, and make a case for tailoring and integrating services.

While there are benefits to cross-sector data collaboration, establishing data-sharing partnerships requires navigating legal and regulatory guidelines that have not kept up with current technology or were not designed with cross-sector collaboration in mind. Cross-sector collaboration, by nature, involves industries bound by different regulations. Potential partners may shy away from sharing data because they are unclear about the legal and ethical implications of data sharing, or because they are wary of what partners may do with the data. Organizations may be concerned with client privacy or feel obligated to protect clients’ information, especially because many cross-sector partnerships aim to address problems confronting vulnerable populations. Organizations may also view legal and regulatory frameworks as prohibitive to data sharing when, in fact, the regulations may allow for sharing data in certain circumstances.

Following are 2 case studies describing how the San Diego Fire-Rescue Department and the Camden Coalition of Healthcare Providers addressed legal and regulatory concerns while building cross-sector data-sharing relationships. San Diego Fire-Rescue’s Resource Access Program (RAP) developed a tool to help staff members understand with whom they can share information and under which circumstances data can be shared. The Camden Coalition of Healthcare Providers, as a partner in the Camden Promise Neighborhood initiative, built a cross-sector data-sharing agreement that was appropriate for the program goals while complying with legal and regulatory requirements for each sector involved. Lessons from these organizations can help programs and initiatives navigate the legal issues at play while establishing data-sharing partnerships.

San Diego Fire-Rescue’s Resource Access Program

Developing a tool to navigate legal and ethical implications of data sharing
One significant challenge that arises during data-sharing collaborations is determining which data can be legally and ethically shared with which partners. For San Diego Fire-Rescue, this lack of clarity impeded communication among the various professionals in that same department. Emergency medical services are inherently multidisciplinary, responding to emergencies that involve the overlapping systems of public safety, healthcare, and public health. Cross-sector professionals who work as coworkers in the department were unsure what could be shared among themselves. For example, an emergency medical services provider treating a burn victim may not know what information can be shared with a police officer conducting an arson investigation for the same incident.

In response, RAP developed a matrix to guide staff through the legal and ethical implications of sharing various data with different stakeholders. Following is a description of the process RAP used to create, implement, and use the disclosure matrix. (See Appendix A for a copy of the matrix.)

1. Identify the need
Complying with the Health Insurance Portability and Accountability Act (HIPAA) is often one of the foremost concerns for data-sharing partners. The most clear-cut way to ensure HIPAA compliance is to have individuals sign a data-sharing consent or authorization form. However, because RAP often works with patients who are experiencing crises, requiring a signed form is not always a reasonable expectation. RAP was specifically interested in developing a procedure that clarified how data can be shared when patients are unable to consent, such as during a medical emergency or when an individual is intoxicated.

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Cross-Sector Partnerships to Address Health-Related Social Needs
Building Trust and Collaborating for Data Sharing
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