Building a Successful Community Information Exchange for SDOH Data

As healthcare organizations look towards community information exchange (CIE) to address social determinants of health (SDOH), community governance and relationship-building are essential, according to officials of HealthierHere, a nonprofit collaborative based in King County, Washington.

HealthierHere comprises over 150 organizations, including hospitals, health systems, community-based organizations, behavioral health providers, federally qualified health centers (FQHCs), social service agencies, tribal organizations, managed care organizations, and government foundations.

"Conversations about growing disparities in King County had been happening for years," Gena Morgan, COO at HealthierHere, noted during ONC's May 13 Social Determinants of Health Information Exchange Learning Forum.

"Health and human service providers and county government had identified the need for our region's health and social care systems to change," Morgan said. "We needed to address the needs of our community's most vulnerable more adequately. Our network came together in 2017 to form a nonprofit collaborative dedicated to improving the wellbeing of those who experience inequity in the health and social systems." 

Washington State pursued a 1115 waiver through CMS, which formed HealthierHere as the region's accountable community of health.

"This effort essentially provided needed infrastructure and funding to support what had been ideas and concepts and desires in our region," Morgan said.

One of these concepts was CIE, which one of HealthierHere's partner organizations had brought up after learning about a CIE initiative in San Diego County.

A community information exchange is an ecosystem of multi-sector network partners that use an integrated health IT platform to support community care planning and initiatives.

HealthierHere began working with the San Diego CIE to understand its model and governance structure, and from 2018 to 2020, the collaborative worked on aligning resources and planning for a future CIE.

"This was really the time where we were looking for resources that were already available but disconnected from one another and getting a collective will together around the establishment of a community-driven information exchange for our region," Morgan said.

The building of the CIE, Connect2 Community Network, began midway through 2020.

"Planning began in earnest with the launch of our Connect2 Community Network after the initial shock of the pandemic," Morgan said. "This network has come together to envision a system that is connected, collaborating together to coordinate care and services that no matter where an individual enters the system, they get connected to the right care in the right setting at the right time."

A core principle of the Connect2 Community Network is a unified platform across all HHS organizations that supports interoperability between existing networks and platforms.

"Equally important is the need to be locally owned and managed collaboratively by the community, not by one organization, platform, or group, similar to a public utility," Morgan said. "We see this as the need to be governed by and to serve the needs of the entire community, especially the needs of our community's most vulnerable."

Sara Standish, associate director of CIE at HealthierHere, echoed Morgan, noting that community governance is key to HealthierHere's CIE work.

"Input from clinical tribal community partners, as well as community members, informs all aspects of our work, including community and consumer engagement, technology, and equity-centered data practices," Standish explained.

"Our governance work doesn't just focus on who's making the decision, but also who has input, who's providing feedback, who's making recommendations, and how voices are elevated in the work that we're doing together," she added.

HealthierHere created its network governance using lessons from San Diego's CIE and tailored the structure to the King County region.

The organization created a network partners work group and a legal data technology work group, which are open to all clinical and community organizations in King County and community members.

"Our governance structure has given us an opportunity to be in dialogue with clinical community tribal partners and community members, not just once, but over time, and to ensure that the recommendations and decision-making is being held by the community itself," Standish continued.

Stakeholders have noted the need for the network to be centered on relationships and enabled by technology, not the other way around, she emphasized.

"Technology is an enabler, but not the end goal," Standish said. "Our work is built on relationships, so there are times when we need to move slower, times when we need to repair relationships, and times when we can move fast because those relationships are established."

"We tailor that speed based on the relationships that we have," she said. "We believe this process has actually improved the output of our content and our work together."

The legal data technology work group has been deciding which architecture would be appropriate for the CIE.

"There are a lot of referral platforms, care coordination, case management, EHRs already existing in our community that do features of this work," Standish explained. "We heard from partners that they're looking for technology that can connect existing systems so that if folks want, they can stay in their existing platform and find ways to share information across organizations."

Standish said the collaborative is still in its early days on the CIE front.

"We're still very early in our CIE journey, so while we've started this work, we continue to learn from others in the space who are doing this work as well," she said. "I expect our governance work to continue evolving as we learn and grow. We're just ending a request for a proposal process that will move us into implementation in the latter half of this year and certainly into 2023 and beyond."

Morgan noted that HealthierHere is planning at the statewide level for how the CIE will integrate with agencies.

"We have been participating in dialogue with our state agencies to share our model and how we have been a community-driven process and how our community has really prioritized interoperability and integration connecting systems that are already in existence," Morgan said. "They have a seat at our table, and as we build our information exchange, they will be a part of those conversations."

Additionally, Standish emphasized the importance of tribal data sovereignty in the CIE work.

"We engaged a tribal data sovereignty expert and with her guidance, we're able to work closely with HealthierHere's Indigenous Nations Committee to discuss specific parts of, for example, the privacy framework that needed to be adjusted in order to make sure that the privacy documents could actually respect tribal data sovereignty," Standish said.

"Those requirements also were added into the request for proposal so that we knew the technology vendor that will be selected will be able to respect both the privacy framework and the components of tribal data sovereignty that our Indigenous Nation Committee raised," she continued.

Standish also emphasized the importance of relationship-building in HealthierHere's data exchange work.

"Our ability to do our work relies on the relationships within and across sectors," she said. "We hope we're building a structure that will deepen those relationships and enable ongoing co-creation of the Connect2 Community Network."