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.

ACEs and Interoperability

by | Sep 28, 2021 | Collaboration Across Sectors, Intrepid

A key focus of health care delivery in the past several years has been on understanding and addressing how non-medical factors impact an individual’s health – a concept referred to as social determinants of health (SDOH). Though much attention over the past year and a half has been focused on the pandemic and its immediate effects, we cannot forget about other health and social issues that continue to have significant and enduring impacts on people’s lives. An emerging approach to combating lasting effects of early trauma centers on Adverse Childhood Experiences (ACEs), which are traumatic incidents that occur before individuals are 18 years old, categorized into three domains: abuse, neglect, and household challenges.[1,2] These experiences are prevalent — a recent report indicated that over 60% of California adults have experienced at least one ACE, and over 16% have experienced four or more ACEs[3] — and are linked with detrimental, cross-generational outcomes.  

ACEs are crucial to address because they can spark a toxic stress response that causes long-term health, behavioral health, and social issues well into adulthood.  ACEs are associated with chronic health issues (e.g., heart disease, cancer, diabetes), mental illness (e.g., depression), and substance use disorders. Additionally, ACEs can negatively influence education and job potential as well as contribute to difficulties in forming healthy and/or stable relationships. The impacts of ACEs also stretch beyond the individual level, resulting in hundreds of billions of dollars per year in economic and social costs.[1] While ACEs have significant and far-reaching repercussions, they are preventable and can be addressed through early screening and appropriate trauma-informed care.[1,2] This type of care takes a patient’s full life situation (including the ACEs that they have experienced) into account, understanding trauma’s extensive impacts, recognizing signs and symptoms of trauma, and folding knowledge of trauma into policies and procedures.[4] In California, the Office the California Surgeon General (CA-OSG) and the Department of Health Care Services (DHCS) are spearheading an initiative called ACEs Aware, which is promoting collaboration across sectors to prevent, screen for, treat, and heal the impacts of ACEs and toxic stress.[5] Since 2020, ACEs Aware has awarded 185 grants totaling over $45 million to organizations throughout California.[6] 

The ACEs Aware initiative highlights communities’ strong need for increased data sharing and interoperability, especially between clinical EHR-based systems and tools used by community-based organizations (CBOs) to provide the non-clinical services central to trauma-informed care. SDOH have extensive impacts, and the ability to exchange health and social services data across disparate systems is crucial to addressing SDOH and improving the health and well-being of individuals and communities. This need for more robust, cross-sector data sharing is reflected in nationwide efforts to expand beyond health information exchanges (HIEs) and focus on a more holistic view of care with community information exchanges (CIEs) – a prevalent theme at this year’s SHIEC conference that I attended (check out this recent blog post from my colleague, Alex Horowitz, to learn more). Through a CIE, members of a care team can access integrated data from multiple sources (e.g., housing providers, food banks, primary care providers), make bi-directional referrals, and establish a longitudinal record to provide more person-centered care.[7] While this level of data sharing is instrumental for trauma-informed care, many barriers stand in the way: 

  • It is challenging and time-intensive to establish a bi-directional referral system in a community, with the need to consider complex issues such as data governance, privacy, and interoperability; 

  • It is imperative (though not always done) to engage with community stakeholders early to assess their needs and readiness for change, as CBOs often face additional challenges in implementing a new IT system (e.g., lack of resources, being burdened with several different reporting systems and requirements); 

  • For ACEs specifically, communities must consider more thorny uses cases, as data is often sensitive (e.g., data from minors, substance use data, psychotherapy notes) and requires special considerations around consent and data sharing. 

At Intrepid Ascent, we’ve recently had the opportunity to learn more about ACEs and the work being done through the ACEs Aware Initiative by partnering with Aurrera Health Group, the technical assistance provider for ACEs Aware grantees. We have additionally been working directly with one of the grantees, Mind OC (non-profit backbone of Be Well OC), as they implement a closed-loop referral system to support ACEs screening and treatment across a trauma-informed network of care. Our firm has also been working closely with different communities to develop policy and technology solutions that support cross-sector data sharing and a collaborative approach to care delivery – work that has been greatly enhanced by the ACEs Aware initiative.    

The focus on reducing the impact of ACEs aligns with larger delivery system reform efforts like CalAIM, a DHCS initiative to change the way Medi-Cal provides and pays for certain services.[8] CalAIM seeks to address the impacts of trauma and SDOH by focusing on the clinical and non-clinical needs of high-risk beneficiaries through comprehensive and interdisciplinary care. This initiative also encourages Managed Care Plans (MCPs) to provide flexible, wrap-around services (e.g., housing transition navigation services, sobering centers, medically tailored meals) that can act as a substitute for other covered services (e.g., hospital care, nursing facility care, emergency department use). MCPs will increasingly need to rely upon referral platforms and engage in community-based closed-loop referrals for both clinical and non-clinical services to meet CalAIM requirements. This in turn will contribute to a larger push for interoperability among EHRs and CBO-facing IT systems. Although not a specific goal of the initiative, CalAIM will therefore work in alignment with ACEs Aware to address SDOH, promote interoperability, and contribute to the shift from traditional clinical-led health information exchange toward community-wide care coordination and data exchange – shifts that are all crucial to screening for, addressing, and ultimately preventing ACEs. 

 1 CDC. “Preventing Adverse Childhood Experiences.” https://www.cdc.gov/violenceprevention/aces/fastfact.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fviolenceprevention%2Facestudy%2Ffastfact.html 

2 ACEs Aware. “ACEs Aware Trauma-Informed Network of Care Roadmap.” June 2021. https://www.acesaware.org/wp-content/uploads/2021/06/Aces-Aware-Network-of-Care-Roadmap.pdf 

3 California Department of Public Health. “Adverse Childhood Experiences Data Report: Behavioral Risk Factor Surveillance System (BRFSS), 2011 – 2017. Oct 2020.” https://www.pacesconnection.com/g/california-aces-action/fileSendAction/fcType/0/fcOid/509387504523927863/filePointer/509387504523928034/fodoid/509387504521175235/ACEs-BRFSS-Data-Report.pdf  

4 Trauma-Informed Care Implementation Resource Center. “What Is Trauma-Informed Care.” https://www.traumainformedcare.chcs.org/what-is-trauma-informed-care/ 

5 ACEs Aware. “About.” https://www.acesaware.org/about/  

6 ACEs Aware. “Community Grant Program Information.” https://www.acesaware.org/grants/grant-program-information/  

7 CIE San Diego. “What is CIE?” https://ciesandiego.org/what-is-cie/  

8 DHCS. “CalAIM Executive Summary and Summary of Changes.” Feb 2021. https://www.dhcs.ca.gov/provgovpart/Documents/CalAIM-Executive-Summary-02172021.pdf  

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.