Access to a health care data-sharing platform can help social service providers better understand and address issues that lie at the intersection of their clients’ social and medical wellbeing. It can: (1) provide insight into relevant details of the medical situation that their client is facing; (2) help the social service organization identify clinicians who may be valuable partners in the individual’s care; and (3) enable them to access documentation that can help them better advocate for the client.
The goal of this play is to help health systems provide access to health-related data to social service organizations in their community.
- Identify a social service partner organization that serves a meaningful number of patients with complex health and social needs.
- Co-design the data-sharing workflow with the partner organization. Use principles of human-centered design, drawing on challenges and opportunities where access to data could help to facilitate patient care. Develop a clear scope of work to attach as an exhibit to the legal data-sharing agreements, outlining roles, responsibilities, and workflow specifics.
- Work through questions of privacy, data security, and technical implementation. Use your standard Business Associates Agreements and Data-Sharing Agreements as baselines.
- Pilot the workflow on a small number of patients, and maintain regular contact to assess progress and troubleshoot barriers. As you expand access with patient permission, remember to track the patient cases — especially success stories — and highlight them for the stakeholders who are using the data-sharing platform. This not only reminds the provider of the extended care team and the ecosystem surrounding the patient, but it also opens the door to further communication and coordination between providers.
- Identify a champion from the partner organization who is interested in trying a new, creative solution and is not intimidated by the idea of piloting a new workflow. Ideally, the champion should be an influencer within the organization with confidence in the ability to activate their team.
- As you co-design the workflow with the partner organization, stay focused on the opportunity to improve the experience for people with complex health and social needs. Hold off on discussing technical and data-sharing logistics until the project goals and associate workflow are pinned down.
- Stay focused on how the data will be shared, not if the data will be shared. As possible, separate the workflow design from the data, legal, and technical logistics conversations to maintain momentum for the project, and to ensure that the legal and technical work is in service of patient-driven care.
- The legal and technical conversations, and stakeholder education about these realities may take longer than anticipated. Stay patient and focused on why health care data sharing is important for improved patient care. Take time to educate stakeholders.
- Try to design a simple workflow that responds to challenges that are faced by both clients and staff. The data should replace some of the heavy lifting that the staff were doing. In addition, patients should feel less burdened to share information multiple times with multiple providers.
- Remember that less can be more! Sometimes a lean data set, such as a list of active patients with unique identifiers, can be enough to get started without needing to integrate and share large quantities of information.
- In the early implementation period, hold in-person meetings no less frequently than once a month, and check in by phone or drop in between meetings. Adoption of a new system can be an overwhelming and intimidating experience. To prevent new partners from losing interest in the data-sharing effort and possibly withdrawing altogether, health care organizations must maintain high-touch relationships with new partners and troubleshoot problems in a timely manner.
- Sample Data-Sharing Agreements - These sample data-sharing agreements were used as part of Camden ARISE, which linked data from criminal justice, health care, and housing in Camden, NJ. The agreements can be adapted for use by other cross-sector groups seeking to share data.
- Cross-Sector Collaboration for Data Sharing - This set of webinars and briefs cover the importance of building trust when embarking on data-sharing partnerships, navigating legal parameters for cross-sector data sharing, and activating shared data.