Dispatch from SHIEC 2021: The Three Emerging Pillars of Community Data Sharing

In a year that has seen fits and starts for industry conferences, the Strategic Health Information Exchange Collaborative (SHIEC) 2021 conference[1] represented a critical industry moment for health information exchange (HIE) and Community Information Exchange (CIE) [2] in the United States. For those that may not have seen the press release, SHIEC is changing its name to “CIVITAS Networks for Health,” or just CIVITAS for short — which means “Community” in Latin. This is a result of their merger with the Network for Regional Healthcare Improvement (NRHI), an organization primarily focused on finding ways to address gaps related to the sharing of social determinants of health (SDOH) data and the inclusion of community-based organizations (CBOs), which are not typically HIPAA-covered entities, in data sharing initiatives. I was very encouraged see the overall shift from a focus on “traditional” HIE to a broader focus on cross-sector data sharing and CIE from this group — especially since SHIEC has traditionally been somewhat “conservative,” in the sense that member HIOs have tended to circle the wagons around new regulations, industry changes, and the idea that HIOs needed to embrace change. More often this group tended to stick to the messaging that HIOs should focus on building density by adding more clinical provider organizations to their networks and generally playing to their strengths with clinical data sharing.

The conversation around cross-sector data sharing between the health care sector and other community sectors such as food and housing (and many others) has been going on for a few years now, both in California and across the country. The national CIE Summit[3] has been running annually since 2018, and CIE efforts in San Diego and elsewhere have been experimenting with this type of cross-sector data sharing since at least 2015. Multiple states (New York, North Carolina, Oregon, Washington, Massachusetts, and California at least) have built this concept into their most recent Medicaid 1115 waiver requests to CMS to varying degrees – with California’s Whole Person Care Pilot initiative being the most recently approved example, and New York’s concept paper for a future 1115 waiver building even more on the concept.[4] California is now working to make certain non-medical services reimbursable benefits of Medi-Cal recipients beginning January 1st, 2022 through its CalAIM initiative.[5] However, it is with the transformation of SHIEC and NHRI into CIVITAS that we are seeing the writing on the wall that the concept of HIOs/HIEs and newly emergent CIEs being distinct, separate entities and movements is beginning to break down. My sense from SHIEC 2021 is that HIEs/HIOs will need to evolve into CIEs to survive — the ability for HIOs to remain relevant solely as islands of clinical data exchange is rapidly falling away in the face of a number of shifting national priorities. However, the flip side is also true – effective CIEs cannot be built without meaningful HIE activity in a given community.

There is a distinct federal focus on public health and away from CMS as the primary source of funding and priorities for HIE – as attested to by several federal agency speakers at the conference. The federal government is (finally) acutely aware that public health is dangerously lagging (due to the outcomes of the pandemic so far) and it seems like the modernization and inclusion of public health in HIE (and CIE) efforts will be a core federal objective for at least the next couple of years (I predict that there will be a shift back to CMS taking the lead in the longer term with cost-savings and alternative payment [APM] models in the form of value-based care [VBP] again becoming the focus for reform). This focus on public health changes the game for how HIOs and communities more broadly will need to align themselves to access federal funds – they will need to at the very least include public health as a meaningful stakeholder in their initiatives and very likely focus their efforts on enabling key public health use-cases such as disease surveillance, calculation of non-APM-related public health metrics, and management of disease registry data streams. Some HIOs have already taken these steps (as was very evident given the number of pandemic use-case sessions at the SHIEC conference this year). But the bridge between public health and non-health care, SDOH data sharing seems to be more of a gap at this juncture that HIOs have a unique opportunity to fill.

[6]

In my opinion, the convergence of “traditional” HIE functionality for clinical data exchange among health care providers, early CIE experiments and Medicaid integration initiatives requiring cross-sector approaches for “whole person care,” and the modernization of public health will form the strategic nexus for data exchange innovation over the next 2-5 years. Communities that focus on addressing local needs at this point of intersection in the Venn Diagram between these three pillars, while leveraging the funding coming down from Federal public health priorities, will see the most success in achieving meaningful, and equitable, community data sharing.

[1] DeSalvo, Karen et al., “Public Health 3.0: A Call for Action for Public Health to Meet the Challenges of the 21st Century,” United States Centers for Disease Control and Prevention: https://www.cdc.gov/pcd/issues/2017/17_0017.htm

[1] SHIEC 2021 Conference Website: https://strategichie.com/2021-shiec-annual-conference/

[2] I am broadly defining CIE for the purposes of this discussion as the sharing of health care and non-health care data tied to specific, identifiable patients/clients within a defined community of organizations.

[3] CIE Annual Summit Website: https://ciesandiego.org/cie-summit-2021/

[4] New York State Department of Health, Office of Health Insurance Programs: [1115 Waiver Concept Paper]https://health.ny.gov/health_care/medicaid/redesign/2021/docs/2021-08_1115_waiver_concept_paper.pdf

[5] State of California Health and Human Services Agency, Department of Health Care Services, “California Advancing and Innovating Medi-Cal (CalAIM) High-Level Summary:” https://www.dhcs.ca.gov/provgovpart/Documents/CalAIM/CalAIM-High-Level-Summary.pdf