Data Exchange: Understanding for Action

by | Apr 4, 2022 | Intrepid

Given the galvanizing effect of California’s Data Exchange Framework planning process, Intrepid Ascent has teamed with the California Health Care Foundation (CHCF) to produce a series of explainers on key topics under consideration by policy-makers and stakeholders. These topics are:

We are pleased to share the first two of these factsheets. The second two explainers will be published in the coming weeks. Drawing on learnings from other states and California’s diverse landscape, we aim to highlight policy options, trade-offs, and best practices in each of these areas.  

As the word “stakeholder” implies, there is a lot at stake for organizations, communities, and the people of California in key decisions to be made in the coming months. We are grateful to everyone participating in the process and making their voices heard, and hope that this series helps establish common language and understanding to move the state forward.

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

by | Sep 15, 2021 | Intrepid

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

 

HIE is a Hot Ticket

by | Sep 7, 2021 | Intrepid

“HIE is the hottest ticket in town right now.” That was an opening statement at this week’s inaugural Data Exchange Framework Stakeholder Advisory Group, a new initiative by the California Health and Human Services Agency (CHHS) authorized under Assembly Bill 133. More than 10 years after the Health Information Technology for Clinical Health (HITECH) Act was passed and the federal government began pumping upwards of $100 million dollars into the state’s health IT infrastructure, we are still grappling with how to break down data silos and enable ubiquitous data exchange. This renewed interest from the top of our state policy-making pyramid is certainly welcome.

In an effort to advance health equity and respond to problems exacerbated by the COVID-19 pandemic, the Governor set a bold vision of building a state-led policy framework that enables widespread data exchange among health, behavioral health, and social service providers, payers, and public health to support person-centered care. The Data Exchange Framework consists of a single data sharing agreement and a common set of policies and procedures that will govern the exchange of health information beginning January 2024. But this is not our first rodeo – California has a long history of attempting, and ultimately failing, to implement a governance framework for widespread HIE in the state. While there is a sense of urgency coming from policymakers, those of us in the field can’t help but wonder what makes this different? And how can we build on all the tremendous work that came before us and finally move beyond talking about the value of data sharing to seeing real and coordinated progress? 

We all know that California’s health care system – particularly the public health system – is fragmented and broken. California has long been seen as lagging behind other states when it comes to modernizing and improving care delivery. As noted in a 2018 blog post by Health Affairs editor in chief Alan Weil, “everyone at the top level talks about integration, but when you look at how the dollars flow, systems are not really integrated.”1

“While parts of California’s health care system rely on coordinated, interoperable electronic systems, other parts rely on decentralized, manual, and siloed systems of clinical and administrative data exchange that is voluntary in many situations. This voluntary patchwork imposes burdens on providers and patients, limits the health care ecosystem from making material advances in equity and quality, and functionally inhibits patient access to personalized, longitudinal health records.”

– AB 133

Unlike early efforts where the state lacked legislative direction and statutory authority, AB 133 provides CHHS with the authority to establish a framework that will “improve how health information is shared across the health and social services systems – protecting public health, improving care delivery, and guiding policies aimed at caring for the whole person, while maintaining patient privacy, data security, and promoting equity.”2 At Intrepid Ascent, we wholeheartedly support this vision and work with communities across the state toward these goals. However, it’s a pretty tall order particularly given the aggressive timeline CHHS must meet – the framework must be finalized by July 1, 2022, with the data sharing agreement executed by a large swath of stakeholders including hospitals, physician organizations and medical groups, skilled nursing facilities, health plans, and ancillary providers, just six months after that. For context, most of the existing regional health information organizations spent close to a year adopting and executing their participation agreements, which only focus on clinical exchange among health care providers and not the expansive cross-sector data sharing envisioned by the Data Exchange Framework. While these efforts can be built upon, likely enabling some shortcuts to “get to yes,” the Stakeholder Advisory Group will not want to get too far ahead of the federal Trusted Exchange Framework and Common Agreement (TEFCA), which is unfolding during this same time period. The Stakeholder Advisory Group’s goal is that by 2024 the initial group of “participating entities will exchange health information or provide access to health information to and from every other entity in real time for treatment, payment, or health care operations.”

That is the broad charge the Stakeholder Advisory Group is working towards, while addressing the extensive list of concerns raised by stakeholders, building public trust, and tackling challenges that have long plagued our health care delivery system. As noted in a previous blog post, “the factors driving shared interest…do not imply shared understanding of HIE today, or a common vision for the future.” This dynamic was on display during Tuesday’s meeting, in which stakeholders voiced concerns and raised good questions:

  • The current vision and perspective is too health-centric and should be broadened to include more social and/or community-based services
  • There is a lack of representation from key sectors such as EMS, corrections, behavioral health, as well as better representation of the LGBTQ community
  • Leverage and build on all the work done to date, as well as adopting national standards and policies
  • Support other services providers that have not benefited from health IT investments previously through funding and technical assistance
  • Provide clear, concrete guidance on privacy laws to reduce tension that occurs with varying legal interpretations
  • What will the governance and enforcement of the exchange mandate look like? 
  • It is not enough to just move data, it also has to be usable

As one Advisory Group Member stated, this is a critical and important opportunity, but with that comes a great deal of responsibility, not least of which will be the ability of the Stakeholder Advisory Group to tackle difficult conversations given the rocky history and setting aside organizational priorities to focus on building trust and creating a system that serves all Californians. Our Principal, Mark Elson, astutely stated in his recent post that while there will be competing interests and fierce debate, we trust that the professional community will operate in good faith, as we have seen over and over again during the long and winding HIE path.  

They say the definition of insanity is doing the same thing over and over again expecting a different result. As the Advisory Group closed out their first meeting, there were indications that we are not just repeating past mistakes, with the healthy emphasis on defining priorities, setting guiding principles, focusing first on the what before the how, and being very explicit that we need to achieve these goals for all Californians. It remains to be seen whether this “big-tent approach” will work given the challenges, but we are encouraged and look forward to working with stakeholders and partners to achieve real and long-lasting success with electronic exchange of health and social data.  

[1] https://www.chcf.org/blog/california-leading-way/#related-links-and-downloads
[2] https://www.chhs.ca.gov/blog/2021/08/20/data-exchange-framework/

California’s Health Information Exchange Landscape

by | Aug 23, 2021 | Intrepid


I’m proud to share that the California Health Care Foundation (CHCF) has published our landscape assessment of health information exchange (HIE) in California. The issue brief is titled Health Information Exchange in California: Assessment of Regional Market Activity, and is accompanied by an Overview of Network Types and Characteristics.

The issue brief profiles four regions – Los Angeles County, Fresno and Environs, Sacramento Metro, and Humboldt County – that represent the diversity of the state and diverse approaches to HIE. In each case, we seek to identify the leading motivators for and methods of exchange as well as gaps and challenges, delving into the unique strategies of specific communities and organizations.

I highly recommend that anyone interested in HIE take the time to read the full report. One could quickly peruse the opening sections to take in the overall findings, but that would leave one with a two-dimensional understanding of a three – or more! – dimensional phenomena. The ingenuity and passion of local actors to realize meaningful data sharing in the face of tremendous challenges animate our regional profiles, which form the core of the issue brief. I hope that these profiles are rich enough that, as you read them, you form your own state-level conclusions, which may or may not be the same as ours. If so we are eager to hear them!

In a companion post next week, my colleague Karen Ostrowski will examine recently passed legislation that sets up a critical year ahead for determining the long-term structure of HIE in California, and there is a lot at stake in the outcome. While there will be competing interests and fierce debate over seemingly arcane topics, I trust that our professional community will operate in good faith, as it typically does. As we expressed in the issue brief, “[We] … wish to acknowledge the dedication and creativity of [our] colleagues in the field, who show up to work every day behind the scenes so that providers and their partners have the information they need to make a positive impact in peoples’ lives.” This dedication and creativity will be key ingredients for any successful policy outcomes that build on existing efforts, such as those highlighted in our report, while empowering innovative new approaches across the state.

A Grand Bargain on HIE in California

by | May 12, 2021 | Intrepid

We are in the midst of an exciting resurgence of interest in health information exchange (HIE) in California. Bills in the state Assembly and Senate seek to chart a path for statewide data sharing, and Governor Newsom’s budget includes a strong endorsement for action on HIE.  

However, the factors driving shared interest – which range from the response to COVID-19, to new federal rules, to a focus on health equity – do not imply shared understanding of HIE today, or a common vision for the future. One hears both that there is very little meaningful data exchange occurring between providers in California, and that it has all been worked out, with data exchange already widespread. How can such divergent claims arise? From my perspective, there are two related explanations: a lack of alignment on definitions of key terms, and the highly variable experience of data exchange. People are using the same words to describe very different experiences. We will publish an issue brief on the HIE landscape in California with the California Health Care Foundation (CHCF) in the weeks ahead that describes the primary types of data exchange occurring in the state today. The issue brief explores these themes through an in-depth examination of data-exchange dynamics in four local markets: Los Angeles, Fresno, Sacramento, and Humboldt. A mid-stream, summary analysis was published in February. 

This post, in contrast, describes a potential “grand bargain” between Assembly Bill 1131 and Senate Bill 371 that would establish a framework for all providers in California to access reliable, complete, high-quality patient data within their EHR workflows. To cut to the chase: should California impose an HIE mandate on providers and payers to share clinical data through a statewide Health Information Network (HIN)? This is the core thrust of AB 1131, which is supported by a broad spectrum of payers, providers, and other stakeholders (see the Connecting for Better Health website for a better understanding of this coalition). SB 371, in contrast, proposes a network-of-networks approach that builds on Health Information Organizations (HIOs), with a common gateway to simplify data-sharing with state agencies. Supported by the major hospital and provider associations, SB 371 does not include a data-sharing mandate (beyond re-affirming the importance of compliance with federal rules), but it does include a requirement that HIOs join the California Trusted Exchange Network (CTEN) and an approved national data sharing network. 

While those of us in the HIE world may focus on the statewide-vs-regional HIO orientation of the two bills, this is not the core issue at stake for California. In fact, both bills speak to a data aggregation layer – let’s call it the HIO layer – with statewide presence, via a combination of regional HIO and state-level infrastructure. So, while they emphasize different ways to accomplish this, they both promote an integrated and interoperable HIO layer across the state, and by the time of implementation we will likely end up with a hybrid model linking interoperable regional and statewide systems. Instead, the core difference in the bills is the mandate for data sharing with a state Health Information Network (HIN) in AB 1131, and the requirement that HIOs participate in both CTEN and an approved national network in SB 371. I propose that a grand bargain with statewide benefit can be reached by implementing the spirit of both of these requirements. Let me explain why and how. 

First, why attempt this bargain? Because we should play to the comparative advantage of existing data exchange methods to maximize overall value for the people of California. As we detail in the forthcoming issue brief with CHCF, EHR-centered data exchange via three national networks (eHealth Exchange, Carequality, and CommonWell Health Alliance, the “National Networks”) predominates at the point of care today, enabling providers to access patient data from outside their organizations within their EHR. The workflow and business advantages of this method, at least conceptually, are overwhelming. Providers stay in their primary electronic system to access external data, which they strongly prefer, and EHRs bundle data-sharing into their contracts with their customers, dramatically lowering barriers to entry to data exchange networks. However, if you look under the covers, EHR-based use of the National Networks is hampered by serious data and workflow issues, significantly reducing their value. Both too much and too little data is available to providers in their EHRs via this method, often eliminating the value of using them, especially outside the large health systems – which are most likely to invest in complex and expensive methods to deliver actionable external information, within workflow, to their providers.  

The HIO data layer, in contrast, often sits outside of EHRs and provider workflows at the point of care; nor do HIO services tend to be incorporated into EHR contracts with providers. Together, these disadvantages weigh heavily on their adoption and use. However, the primary value of an HIO layer derives from the ability to enhance data quality, or the completeness, validity, consistency, and accuracy of data – precisely what the National Networks lack. Unlike the National Networks, which do not store data but instead enable participants to share data directly with each other, HIOs aggregate, link, harmonize, and clean data from a wide variety of sources, redistributing data of a much higher quality than what they ingest. Think of this almost like a filtering function, with HIOs serving as stewards of the precious resource that is patient data, not only establishing comprehensive records for individuals, but also powerful data sets at the community and regional levels to support population health monitoring and improvement. In the first instance, this value depends on the completeness of the data set, and the HIO layer in the state has nothing like a complete data set today. (Furthermore, as mentioned above, larger health systems often perform these functions internally for their own providers, causing them to perceive the value proposition of the HIO layer in a very different light than smaller provider organizations might).  

But imagine if you combined the advantages of the National Networks integrated into provider EHR workflows with a complete and high-fidelity external data set via an HIO layer. Achieving this outcome on a statewide scale, through aligning the comparative advantages of the National Networks and HIOs, is the primary rationale for a grand bargain on HIE in California. It would unlock dramatic improvements both in patient care and in the provider experience of accessing external data to provide this care. 

How, then, would the bargain work? First, by addressing the need for data completeness in the HIO layer through a mandate for data-sharing as envisioned in AB 1131. Second, by requiring participants in the HIO layer – the Health Information Network (HIN) in AB 1131, regional HIOs, and approved commercial services, potentially – to join the California Trusted Exchange Network (CTEN) and a National Network, as broadly envisioned in SB 371.1  And third, by the state, which has historically avoided funding HIE, stepping up to partner with payers to fully fund the core functions of the HIO layer (with as much federal support as possible), rather than HIOs or the HIN charging providers for these services.  

An active HIO presence on the National Networks enables providers to query for and retrieve an HIO’s high-quality, comprehensive individual record, within EHR workflows that providers use today. This transaction pattern is already happening between some HIOs and major health systems. State support and a mandate for provider and payer data submission would definitively establish a “golden record” in the HIO layer as the go-to source of truth for providers using the National Networks in their EHR workflow, greatly alleviating the onerous task of sifting through clinical documents from multiple sources. This would meaningfully improve the viability, experience, and population health impact of data exchange in California through aligning the strengths of the National Networks and HIOs.  

If this approach delivers substantial collective gains, who has to give something up to make it happen? Many providers do not want to be subject to a data-sharing mandate, believing that clinical data aggregation should occur within their organizations in their EHR, and they may not want to incur the costs of joining an HIO. Meanwhile, most HIOs do not fully participate in the National Networks, because doing so opens up their data to organizations outside their circle of contracted and paying members, decreasing the incentive for these organizations to join them. The bargain, then, would require providers to be mandated to share data with an HIO layer (as in AB 1131), and HIOs (including the HIN) to be mandated to share their high-quality data with all providers in the state who have onboarded to the National Networks or CTEN (as in SB 371), in accordance with all applicable laws and regulations. And the state would need to commit to long-term financial accountability for this venture, with support from federal and payer partners; resulting efficiencies in our health care system would more than repay this investment over time.  

While there are multiple viable paths forward for HIE in California, the grand bargain outlined here would have a powerful positive impact on the people of our state and the health care providers who serve them.

 
 

[1] CTEN represents a critical axis in this model, building on its current role as the key link between HIOs, the National Networks, state agencies, and large health systems; as such, CTEN provides a tremendous policy and governance opportunity for the state. California HIOs and others can onboard to the National Networks via CTEN, in fact, on advantageous terms.