What is CIE? Developing Community Information Exchange in California and Beyond 

Community Information Exchange (CIE)i networks develop shared governance and technology to support cross-sector collaboration addressing social determinants of health. They bring together diverse partners from health and behavioral health care, social services, education, the legal system, tribal entities, and other organizations to build relationships, goals, and agreements. By delivering core infrastructure and methods for active planning and collaboration across organizations and programs, CIEs serve as critical hubs in communities integrating systems of care to improve services and outcomes, especially for their most vulnerable residents. 

Many related initiatives have advanced integration within systems of care. For example, Health Information Exchange (HIE) efforts aggregate medical data in one record that clinicians across health systems can access, while housing Continuums of Care have come together to build coordinated entry services and shared documentation in homeless management information systems. CIEs, in contrast, knit together these partners through tools and data that span sectors to provide more holistic and actionable views of community needs and the complexity of individuals. My colleague Mark Elson provides more information on the distinctions between HIE and CIE in a companion post. 

There are many types of processes that CIE networks try to improve through shared goals, agreements, and technology. These often include:  

    • Assessments of individuals’ needs 
    • Eligibility and enrollment in appropriate programs and services  
    • Building an individual care record and a holistic care plan 
    • Facilitating referrals for services across organizations and sectors linked to a community resource directory 
    • Communications and workflows among distributed care teams 
    • Individual consent for data sharing and participation in organizing one’s care 
    • Reporting and analytics to illuminate inequities and upstream causes of health and social issues, and to identify gaps in service supply  

Policy Drivers 

Many programs and funding streams across the country are driving cross-sector collaboration. These include Accountable Communities for Health, Medicaid transformation projects, issue-focused funding (such as Adverse Childhood Experiences (ACEs) Aware), and state legislation that all push for collaboration between health care providers and community-based organizations. Each has a slightly different focus, but all are pushing communities to build connections across sectors to improve services, experiences, and outcomes for vulnerable populations. Below we describe a few programs that have allowed innovative communities and CIE pioneers to start building capacity, infrastructure, and sustainable collaborative practices.  

Federal programs: Center for Medicaid Services (CMS) 

Starting in 2015 to advance the triple aim, CMS began funding some states to implement Accountable Communities for HealthThese began as regional public private partnerships that are designed to be conveners, coordinating bodies, and investment hubs to better connect health care delivery systems to community service providers. In 2016, CMS funded additional five-year Accountable Health Community pilots in 28 communities, which focused on connecting eligible residents with community services to address five core health related social needs: housing, food security, utility assistance, transportation problems, and interpersonal violence. Services focus on screening, referral, and navigation, with most screening occurring in hospital settings. The first evaluation report indicated that most communities built upon existing infrastructure and relationships, but that AHC funding allowed for the formalization of processes for screening and referrals, and expanding capacity for navigation services.  California funded 8 regional ACH communities through these State Innovation Model funds. In the years since then, many other California Medicaid innovation projects have continued to drive cross-sector collaboration. 

 In 2016, California matched CMS funding with state general funds and local sources to test new cross-sector collaboration approaches with DHCS’s Whole Person Care pilots. This program funded 25, 5-year pilot programs to develop new wrap-around case management services to better serve clients with complex needs. These funds allowed lead entities,  

to receive support to integrate care for a particularly vulnerable group of Medi-Cal beneficiaries who have been identified as high users of multiple systems and continue to have poor health outcomes. Through collaborative leadership and systematic coordination among public and private entities, WPC Pilot entities will identify target populations, share data between systems, coordinate care real time, and evaluate individual and population progress – all with the goal of providing comprehensive coordinated care for the beneficiary resulting in better health outcomes. 

This program funding continued regional pressure in California to knit together health, behavioral health, and social service systems of care with improved agreements and collaboration processes or tools. Rather than just focusing on referrals from hospitals, many WPC pilots required the development of a shared care plan across organizations providing care within 30 days of enrollment. This pushed many counties towards identifying cross-sector care teams, developing more sophisticated data sharing frameworks, and implementing secure collaboration tools. Some counties built upon assessment and referral infrastructure. Others focused on implementing tools that would allow for more in-depth data sharing for long-term case management and collaboration. 

State Initiatives: 

Two other initiatives continued to push collaboration for specific populations. In 2018 the State passed Senate Bill 1152 (Health and Safety Code § 1262.5) which requires hospitals to have a written plan for coordinating services for patients experiencing homelessness. This bill increased pressures on hospital systems to have an efficient way to refer patients to community-based services and has led many regional efforts to implement directory and referral networks. In 2020 California also announced funding for the Adverse Childhood Experiences (ACEs) Aware initiative. This program provides grant funding to communities across California to build networks and strategies to address Adverse Childhood Experiences and toxic stress. Grants support provider engagement and training, but also building a network for care planning and care implementation, creating new opportunities and new challenges for existing networks and service providers. 

The outcome of many of CMS’s pilot projects is the creation of a new a Medicaid benefit for vulnerable California residents. This year, Whole Person Care pilots are transitioning many services into Medicaid benefits offered by Managed Care Organizations (MCOs) under California Advancing and Innovating Medi-Cal (CalAIM). The program is focusing on building capacity to implement population health management strategies, and offering integrated services to key populations of interest, starting with Medi-Cal members with complex medical needs (Enhanced Care Management) or who are experiencing homelessness or require other community services to support health like medically tailored meals (Community Supports). Future waves of implementation will include better access to behavioral health services and re-entry services for justice involved adults and youth. While important for long-term sustainability of critical case management and community services, transition of the program to MCOs is challenging the systems set up under WPC pilots. 

CIEs as Multi-Purpose Infrastructure 

What all of these examples illustrate is that there are often short-term initiatives that drive innovation; however, each of these efforts has its specific program requirements and target populations. Building a CIE requires stepping back from each individual program’s specific needs, to consider the broader long-term goals of a community. CIE development must start with those broader goals to build a system that centers the experience and rights of community residents, that does not over-burden community-based service providers, and does not continue to build and re-build with every program transition. Braiding together program funding can bring new providers into the network of stakeholders, or could allow the network to serve new groups of residents, but the goals should be to build a resilient, multi-purpose system of care and collaboration that will outlast any one programmatic funding stream. This requires the lead local entities on specific programs to work through a broader community framework, an approach that at times generates resistance from program managers whose jobs require them to deliver on their specific program needs, often on short timelines from state or federal funders.   

One CIE pioneer, the 211/CIE San Diego, has harnessed programmatic funding opportunities over the past two decades to establish and expand their network of service providers, build a community governance framework, and implement multi-purpose technology solutions. CIE San Diego defines CIE as  

a community-led ecosystem comprised of multidisciplinary network partners using a shared language, a resource database, and integrated technology platforms to deliver enhanced community care planning. A CIE enables communities to have multi-level impacts by shifting away from a reactive approach towards proactive, holistic, person-centered care. At its core, CIE centers the community to support anti-racism and health equity.”  

In a presentation at the California Primary Care Association meeting in 2019 entitled, “Community Information Exchanges (CIE): Changing the Landscape – Coordinating Social Determinants of Health,” they present a timeline that shows how they have harnessed opportunities to grow, test, and iterate their service offerings over time (Slide 9). These have included initiatives like the ONC’s Beacon Community grants that supported HIE expansion after the passage of the HITECH act, partnership and funding from Managed Care Health Plan partners for health navigation services, and California Whole Person Care funding that helped expand structured approaches to assessment, risk ratings, and developing a longitudinal care record in a shared technology platform. They expand upon some of the influences shaping CIE in the opening sections of their CIE Toolkit, which they offer to other communities engaged in this work. 

211/CIE San Diego has produced and shared many practical resources designed to help communities build beyond individual program requirements. 211/CIE San Diego’s CIE toolkit and the Data Equity Framework (Collaboratively developed with Dr. Rhea Boyd and Health Leads) provide tools that center community vision, goals, and control of information and data. They offer both written materials and a series of sessions from the 2021 CIE Summit called “Leading with Community to Drive Systems Change.” In addition to sharing lessons learned on broad CIE implementation they offer many materials to help CIE communities put equity theory into practice through their series on Leveraging CIEs for Equitable and Inclusive Data. This includes the data equity framework, a vision for the future, and examples of CIE work in communities around the country. In 2022, they are focusing their convening efforts on a conference called Aligning California, Maximizing Opportunities to Advance Local Community-Led Networks. The need for this type of convening stems from both the opportunities and challenges communities feel as CalAIM and other pressures push regional networks to adapt to new programmatic demands. 

Conclusion 

CIEs are ideally positioned to power cross-sector collaboration and data sharing to address community needs across programs. Many communities developing CIE services are sharing learnings and tools to build policy and technology frameworks that center on clients, support front-line service providers, build local control of data, and unify systems of care. We will explore how large-scale initiatives such as CalAIM can support broad systems planning and collaboration rather than building new program silos, and how some communities are doing this work, in future posts. 

i CIE® is a registered trademark of 211 San Diego. For more information about the trademark, see the following webpages on the legal status and brand guidelines for the term.  

Understanding HIE and CIE Alignment

Propelled by local and government demand for services coordination across health, behavioral health, housing, and other social services, the concept of Community Information Exchange (CIE)i is gaining momentum in communities across the country. As explained by my colleague Keira Armstrong here, CIE enables collaboration and data sharing to address social determinants of health through whole person care approaches. 

In this post, I contrast Community Information Exchange (CIE) with Health Information Exchange (HIE) to cast into relief important differences, highlight core similarities, and explore the alignment of HIE and CIE services. A primary goal here is to assist health care colleagues who are familiar with HIE to grasp more concretely the opportunities and challenges of CIE and what they mean for our field. I conclude with considerations for HIOs that wish to expand to offer CIE services and, on the other side of the coin, offer recommendations for CIEs that seek to leverage the value of health information exchange in their communities. 

What’s in a Name? 

It has become standard practice to refer to the act of health information exchange (“the verb”) as HIE (or “data exchange”), while referring to organizations that facilitate and manage HIE as Health Information Organizations (HIOs). In contrast, the term Community Information Exchange (CIE) designates both the act of engaging in CIE and the organizations dedicated to facilitating this activity (CIEs). I will focus here on HIOs and the services they provide rather than on broader national EHR-based networks for data exchange given that CIEs have much more in common with HIOs than with the national networks. 

The name “Community Information Exchange” bears a clear resemblance to “Health Information Exchange,” and “CIE” likely was coined in reference to “HIE.” Whether intentional or not, the name “CIE” gives the impression of describing the same phenomena as HIE, but with a twist: a focus on the community level of exchange and the inclusion of non-clinical data from social and human services. However, as we will see, CIE generally does not simply take the form of HIE and sprinkle in some additional data elements; while they do share important characteristics, there are fundamental differences in orientation, services, and aims. In short, while HIOs facilitate data exchange among health care providers and health plans for a complete historical clinical record, aspects of which can be delivered into clinical workflows, CIEs serve as user-facing collaboration hubs for coordination of services across sectors.   

Many programs, for instance Medicaid delivery system integration efforts such as the 1115 Waivers in California (CalAIM) and New York (DSRIP 2.0), require significant CIE services but do not use the term “CIE” to denote them – reflecting the fact that we are dealing with emerging phenomena without fully settled naming conventions. As this and our companion piece describe, we take a broad view of CIE as the best single lens – to date – through which to understand a range of related activities and infrastructure. 

Similarities and Differences 

The table below compares HIOs and their HIE services with CIEs and their CIE services; this mapping represents core prototypes of each category and may not apply in marginal cases.  

HIOs/HIE  CIEs/CIE  Key Similarities and Differences 
Mission  Facilitate clinical data exchange among health care providers to improve health care services and outcomes  Enable cross-sector collaboration addressing social determinants of health through shared governance and technology  

Similarity: Foster coordinated care across organizations serving shared populations 

Difference: While HIOs emphasize exchange of historical clinical data, CIEs focus on enabling collaboration across sectors 

Multi-Purpose Infrastructure  With robust clinical data density, HIOs support a multiplicity of health care use cases, programs, and needs With robust governance and technology for collaboration across sectors, CIEs support a multiplicity of use cases, programs, and needs  

Similarity: Both HIOs and CIEs provide multi-purpose infrastructure that breaks down organizational and program siloes in defined communities or regions 

Difference: HIOs support health care-focused use cases and programs, while CIEs support cross-sector-focused use cases and programs 

Service Area  Regional or state  Generally more focused in a local region or community 

Similarity: Value increases with local data and user density 

Difference: CIEs tend to focus on similar or smaller regions than HIOs

Participants  Health care providers, plans, and government partners  Same as HIOs plus social and human services, CBOs, and  community resource directories (such as 211s) 

Similarity: Multiplicity of organizational participants 

Difference: Whiles HIOs focus on clinical organizations, CIEs have a much broader footprint 

Governance and Leadership  Typically regional or state-level non-profits or private-public partnerships  Typically local/regional non-profits or public-private partnerships  

Similarity: Both benefit from stakeholder governance via a non-profit structure 

Difference: HIO governance is now well established, whereas CIE governance bodies bring together partners across sectors on boards and committees, requiring more time to align goals, agreements, expectations, and capabilities 

Functionality 

Move clinical data between participants’ IT systems; build a centralized data repository to create a longitudinal patient record; clinical alerts pushed into participant EHRs; analytics and population health management, among other services. 

Typically read-only access to historical information, with some data pushed into participants’ systems for their usage and manipulation in workflow 

 

Assessments/screenings; eligibility/enrollment; shared care planning and curated care record; closed-loop referrals, especially between sectors (such as health care to social services); other workflows for distributed care teams; consent management 

Typically read- and write-access to data in user-facing collaboration tools  

Note that CIE, from our perspective, is much more than a referrals network as it is sometimes defined; it is also much more than the addition of SDOH data fields to an HIE record 

Similarity: Aggregation of data from multiple sources with user views into relevant, actionable data 

Difference: HIOs facilitate clinical data exchange between disparate systems and provide access to longitudinal individual records and population analytics; CIEs provide a platform for care coordination across disparate organizations, which may include user access to individual care plans or records and population analytics 

Data  Primarily clinical data to date (patient demographics, procedures, diagnoses, problem lists, lab results, medications, claims, etc.), with feeds from all participating organizations; HIOs may serve as a “source of truth” with a comprehensive patient clinical record  Mix of clinical, SDOH, and social services data generated by usage of a shared CIE platform, often enhanced by data feeds from external sources with actionable information; platform may be accessible within EHRs or other systems via Application Program Interfaces (APIs) or Single Sign On (SSO) 

Similarity: Data integration across organizations 

Difference: Data integration and exchange is an HIO’s core function, whereas CIEs focus on actionable data that directly supports effective workflows in their network 

Data Governance Well-established mechanisms for data governance anchored in participation agreements, P&Ps, security controls, and adherence to laws and regulations; state law creates some variability and uncertainty, with data falling outside “the HIPAA tent” often simply not included in HIO data sets (e.g. substance use data governed by 42.CFR.2, and mental health information in some circumstances); individual consent is gathered and managed in a minority of regions (e.g. in NY)  Emerging mechanisms for data governance similarly anchored in data sharing agreements (DSAs), P&Ps, security controls, and adherence to a broader set of laws and regulations; gathering and managing individual consent, often in the form of a broad multi-use consent which covers multiple data types, programs, and uses, is a baseline requirement for most CIEs 

Similarity: Overall alignment in basic data governance frameworks, largely driven by clinical data protection needs 

Difference: The majority of HIOs do not gather individual consent for data sharing, defaulting to clinical organization NPPs and staying in the HIPAA tent, preventing themselves from being able to offer CIE services; CIEs, in contrast, have built advanced consent gathering and management practices into their core operations, enabling them to address a much broader spectrum of use cases and data to support whole person needs 

Funding  HIO revenue is primarily generated through participant subscription fees, with government grants and other funding a secondary source  CIE revenue is generated through subscription fees paid by health care participants (CBOs often don’t pay), with government grants and other funding an equally important source

Similarity: Combination of subscription fees and government funding 

Difference: While core HIE services have established revenue streams, significant new funding is supporting CIE 


Integrated or Complementary Services? 

Five or so years ago, one might have realistically imagined that HIOs would add CIE services – such as technology for community-level care coordination and closed-loop referrals between health and social services – to their offerings. Medicaid agencies in states like California and New York were pouring billions of dollars into the alignment of the Medicaid delivery system with social and human services to address social determinants of health and complex care needs, and data infrastructure was at a premium for this transition. Nevertheless, HIOs largely stayed in their clinical lane, while a new set of coalitions (CIEs, Whole Person Care Pilots, referrals networks, etc.) and vendors (closed-loop referrals, care coordination) emerged to meet the demand. This conservative approach by HIOs has been driven by the structural differences between their historical business model and the emerging CIE model documented in the table above and further elaborated here: from differences in participants and leadership, to data governance and consent, to distinct services. 

    • Participants and Leadership. HIOs are led by Boards of health care representatives from among their participating organizations, with little if any representation from social or human services; they naturally focus on clinical data exchange and workflows; to the extent that HIEs participate in cross-sector engagement, they typically do so from a health care perspective; 
    • Data Governance and Consent. Getting to “yes” for HIE has not been an easy road for most health care organizations, given legitimate concerns about data privacy and security and the use of data for competitive ends. While that set of debates has largely been settled in favor of data exchange, sharing clinical data with social and human services providers has introduced a new set of challenges. In California, state statutes and regulations specific to Medi-Cal’s Whole Person Care and CalAIM programs established a “safe zone” for cross-sector data sharing relative to state law. Even so, nearly all of these state-funded local efforts have also implemented comprehensive individual consent for data sharing that covers a broad, multi-purpose set of use cases including both HIE and CIE services. In contrast, most HIOs outside of states such as New York, which implemented an “opt-in” consent framework, do not obtain individual consent due to the perceived administrative burden. As a result, these HIOs, which include all HIOs in California, have essentially disqualified themselves from being able to offer CIE services at scale. This situation is unlikely to change unless there is action at the state level to both mandate and manage individual consents for cross-sector data sharing and collaboration.
    • Service model. HIOs are in the business of data collection, aggregation, and access. A baseline form of access is a read-only HIE portal with longitudinal, historical patient records. HIOs also deliver some patient data directly into their participants’ IT systems so that actionable information can be incorporated into providers’ workflows. In contrast, CIEs offer high-touch tools accessible through a user interface for care coordination with write-to and not just read-only functionality, and it is important for users to operate in the CIE platform itself. They do not attempt to provide comprehensive longitudinal records. To address workflow issues for providers who prefer to stay in their EHR, APIs can enable users to access the CIE platform from within their EHR, although such capability has not been broadly implemented. In any case, the provision of a user interface for real-time collaboration is a departure from the HIE service model of providing access to and delivering historical patient data. 

Due to these factors, we have not seen a single HIO in the country offer CIE services at scale – to all of its members and covering all of the population it serves through HIE. Instead, complementary rather than integrated services have emerged at the intersection of HIE and CIE where such innovative connections have been proactively pursued. In many cases, HIOs have acted as data-sharing partners to CIE efforts and their core vendors, pushing actionable clinical information to the CIE. This takes advantage of HIOs’ core service as clinical data suppliers, albeit to a new type of partner. A small number of HIOs in California have gone so far as to contract with care coordination platforms on behalf of County-led Whole Person Care pilots (we supported such developments in Humboldt, San Joaquin, and Santa Cruz Counties). These HIOs implemented focused data sharing between systems such as the delivery of hospital event notifications into the care coordination platform. Some other HIOs outside of California have begun to contract with closed-loop referrals vendors (including state HIE networks in Michigan, Arizona, and Colorado), but it remains to be seen how they will integrate such services with their core HIE offerings. In all of these cases, CIE services have been developed through parallel technical and governance infrastructure to HIE, rather than being integrated into the HIO’s governance and technical infrastructure for HIE. Alameda County’s Whole Person Care Pilot has perhaps gone the furthest, building a new Social Health Information Exchange from the ground up with its vendor partner UpHealth that offers many HIE and CIE type functions; the County is now in the process of exploring full HIO status within California’s structure for data exchange. 

Conclusion 

HIOs and CIEs share a number of important structural features, such as data exchange across organizations to improve services and outcomes, multi-purpose infrastructure, multi-stakeholder governance, and a value proposition driven by the density of participation among organizations serving a shared population. However, they have distinct service models, different participant and Board profiles, and the majority of HIOs that do not obtain patient consent have an additional barrier to merging CIE services with HIE. Given this confluence of factors, CIEs will likely continue to emerge as distinct coalitions and networks in many regions, while some innovative HIOs will contract with CIE vendors to offer specific CIE services for a subset of their members and population, positioning them to explore deeper integration over time. Across the board, given policy and market demand, HIE and CIE services will become increasingly complementary regardless of their organizational homes – while retaining their unique identities and functions.  

Considerations for HIOs that want to expand into CIE. HIOs are well positioned to play a key role in supporting CIE. Below is a list of some ways that HIEs may do so.  

    • If CIE exists in an HIO’s service area, the HIO may offer to serve as a supplier of relevant clinical data to the CIE. This provides a “single pipe” of clinical data to the CIE, saving the CIE tremendous time and effort in establishing inbound clinical data feeds. Data governance of clinical data shared with the CIE would become the responsibility of the CIE to manage, and this should be spelled out in the data sharing agreement between the two organizations.
    • An HIO’s Master Patient Index (MPI) is one of its most valuable assets, and this asset could be used to support identity management within CIE technology tools, which may not have either the same level of patient-matching sophistication or data for identity management.
    • Some communities with multiple vendor networks for social referrals have sought a technology solution to sit in the middle of these networks to direct referrals traffic between them. An HIO could either seek to develop this capability in-house or contract with a third-party vendor to operate such a function locally, potentially leveraging other HIO assets such as the MPI in the process.  This aligns with HIOs’ commitment to interoperability.
    • An HIO may be well positioned to mediate data exchange between different types of CIE tools as well (e.g. a care coordination system and a referrals system), or mediate a CIE’s ingestion of data from other relevant non-clinical data sources (e.g. Housing Management Information Systems, jail scheduling systems).
    • An HIO may be well positioned to receive specified data feeds from a CIE system to then aggregate social and clinical data and enable population analytics.
    • As seen in several examples above, an HIO may manage a procurement process and hold contracts with CIE vendors on behalf of the community.
    • In addition to holding contracts with CIE vendors, an HIO with a strong governance structure that can accommodate new members and voices from social and human services would be well positioned to consider serving as the CIE backbone organization in its community.
    • Conducting an assessment of the HIO’s governance, technology, and business models to evaluate the HIO’s readiness to embrace CIE could help HIO leadership consider how complementary HIE and CIE services could offer stakeholders cost-effective multi-program infrastructure. Understanding state and federal requirements related to consent, and a potential reconsideration of the HIO’s consent model to enable CIE use cases, may yield important insights on both opportunities and challenges ahead.  

Considerations for CIEs that want to leverage HIE. In the other direction, CIEs can leverage HIOs in the following types of ways (many of these correspond to an item in the list above, but from the CIE perspective). 

    • If a CIE effort is early-stage and has not identified a backbone organization, consider the local HIO as part of the selection process for this role. HIOs have years of accumulated experience with multi-stakeholder governance of critical data assets, and may be in an ideal position to expand their scope and leadership structure to serve as the CIE backbone organization.
    • Explore engaging an HIO as a supplier of relevant clinical data to the CIE. This provides a “single pipe” of clinical data to the CIE, saving the CIE tremendous time and effort in establishing inbound clinical data. Data governance issues, such as appropriate user access controls, are the responsibility of the CIE, and should be spelled out in the data sharing agreement between the two organizations.
    • An HIO’s Master Patient Index (MPI) is one of its most valuable assets, and this asset could be used to support identity management within CIE technology tools, which may not have either the same level of patient-matching sophistication or data for identity management. 
    • Some communities with multiple vendor networks for social referrals have sought a technology solution to sit in the middle of these networks to direct referrals traffic between them. If this is an issue in your environment, consider partnering with an HIO that could either seek to develop this capability in-house or could contract with a third-party vendor to operate such a function locally, potentially leveraging other HIO assets such as the MPI in the process. This builds on the HIO commitment to interoperability.
    • If contracting with multiple types of CIE vendors, consider leveraging an HIO to mediate data exchange between them (e.g. a care coordination system and a referrals system);
    • Look to the HIO to mediate your CIE’s ingestion of data from other relevant non-clinical data sources (e.g. Housing Management Information Systems, jail scheduling systems), if the HIO is able to accommodate such data.
    • An HIO may be well positioned to receive specific data feeds from your CIE system(s) to then aggregate social and clinical data and enable population analytics, resulting in cost-sharing for such functionality between the HIO and CIE.
    • Consider partnering with an HIO to serve as the contract-holder with all CIE vendors to centralize vendor management; if the CIE backbone organization is separate from the HIO, it would execute an all-in-one agreement with the HIO for these services;  
    • Conduct an assessment of the CIE’s governance, technology, and business models to evaluate readiness to engage with an HIO, ingest clinical data from the HIO, and effectively align services. If the HIO collects patient consent, evaluate whether the consent form and process can be expanded to support cross-sector collaboration and data-sharing. Consider how HIO and CIE alignment offers stakeholders cost-effective multi-program infrastructure. 

New Consulting Groups at Intrepid Ascent

I am pleased to announce that Intrepid Ascent has reorganized our consulting teams into three groups: Technology Strategy, Policy Innovation, and Community Change. Our services will continue to be delivered by interdisciplinary teams, with resources drawn from each of these areas, but with one group at the forefront depending upon the challenge at hand.  

Defining our areas of focus in this manner provides three perspectives on the interconnected issues our clients face today as they integrate services across sectors to address social determinants of health and advance health equity. This definition also reflects the evolution of our focus over the past five years from health information exchange to broader community collaboration and the data infrastructure required to support it. Together, our groups provide clients with a commitment to understanding their technology needs and opportunities, navigating complex policy landscapes, and putting people at the center of change.  

Please read more about each of our groups here. Our group leads and I would love to hear from you with any ideas for how we might support you in driving positive impact. 

-Mark 

Who should be the HEROs of New York State’s Proposed 1115 Waiver?

As the Centers for Medicare and Medicaid Services (CMS) continues to focus on alternative payment models for payment reform and the transition to value, states have responded with innovative proposals to reform the delivery and payment of Medicaid services, with increasing focus on the integration of social determinants of health (SDOH) data and systems of care. New York state specifically has historically demonstrated creative approaches to Medicaid reform with their 1115 Waiver Delivery System Reform Incentive Payment (DSRIP) program, which sunset in December 2020. While the previous 1115 Waiver in New York[1] focused on reducing preventable hospitalizations with a tertiary nod toward improving coordination of traditional healthcare and SDOH focused services, the newly proposed 1115 waiver is intended to serve as a more dedicated statewide effort in the shift towards value-based payment with robust approaches to integrating SDOH services data and the community-based organizations (CBOs) that provide those services with traditional care delivery systems of care. The program is anticipated to start in January 2023 with community planning work kicking off this fall.

One of the main pillars of this proposed waiver will be Health Equity Regional Organizations (HEROs) which will act as regional coalitions of managed care organizations, health systems, community-based providers, long-term support and services, and regional health information organizations, among others. In contrast to the Performing Provider Systems (PPSs) under the previous 1115 initiative in New York State, HEROs will not distribute payments directly to participating providers but will receive funds in the form of planning grants focused on developing the necessary infrastructure and governance structures to ingest and share health and social data from government and proprietary sources for the purposes of regional planning. This new initiative also incorporates the development of Social Determinants of Health Networks (SDHN) which will be another type of regional entity overlapping with HEROs that will serve as a coalition of CBOs for the purposes of contracting for services to be rendered under the waiver. This post will focus on HEROs and how organizations can begin thinking about planning efforts ahead of waiver approval and we intend to cover SDHNs in detail in a future blog post.

Under the proposed 1115 waiver, there will be nine regions with one HERO per region, as defined by the Managed Care Regions used by the New York State Department of Health (NYSDOH) for Medicaid rate setting (see figure 1). Broadly, HEROs can be new or existing entities which could include local departments of health or social services, behavioral health IPAs and other structures formed by regional participants such as PPSs. During the first public comment period for the waiver concept paper, many organizations specifically requested for multiple HEROs to be allowed per-region or that one or more of the nine initially proposed regions be split. In response to this, NYSDOH stated that at least two regions, likely to include New York City, may be divided into multiple sub-regions.

While some PPSs may be well positioned to become HEROs with minor modification to meet the governance requirements, many PPSs have discontinued operations following the end of DSRIP which presents an opportunity for new collaborations to surface. Local health departments are another example of existing entities that could be well-appointed to serve as the regional HERO, being able to leverage existing infrastructure for data sharing as well as established relationships with other government entities like housing authorities – but historically these entities have been slow in New York to participate in initiatives like DSRIP and Health Homes, especially compared to States like California where Whole Person Care specifically focused on building infrastructure at this level. Given the current landscape in New York, it is likely that new organizations will by-and-large need to step up to play the HERO role in most regions.

Figure 1: New York State Department of Managed Health Care Regions

The primary function of HERO entities will be to receive and ingest data from national, State, local and proprietary data sources to enhance regional population health management enable value-based payment contracting arrangements for social and medical services. It will be up to the discretion of the HERO entity to implement a range of VBP models or other targeted interventions suitable for the needs of the region. HEROs will be responsible for developing an annual Regional Plan that will outline how the region will establish goals and milestones to accomplish the work. Regional Plans can also include initiatives to promote data collection and data sharing functionality for coordinated care management for population health improvement.

While the proposed waiver awaits a second round for public comment, it is in the best interest of the defined regions to begin strategic planning efforts for stakeholders who want to have a leadership role in the proposed 1115 waiver initiative. Regions can hold public forums to educate community partners about the proposed waiver and discuss options for defining a backbone entity, and active PPSs should determine the feasibility of applying to be a HERO organization for their region. At the very least, key stakeholders should begin to discuss the critical needs and gaps in the region in preparation for Regional Plan development. Given the significant gaps related to both IT solution design and overall data governance that impeded the ability of PPSs to comprehensively address their key goals during the first 3 years of DSRIP, it is very likely that NYSDOH will expect HERO and SDHN applications to contain clear strategies for their overall IT approaches that are linked to thoughtful approaches to the data governance challenges of linking data and services across the traditional healthcare and non-HIPAA-covered SDOH service delivery system(s) in their region. In addition, planning efforts will likely need to rely on access to benchmarking data, including data that may not be well structured as it contains SDOH or other non-healthcare data elements. Potential HEROs / regional planning efforts should consider working with the following organizations to determine what kind of benchmarking data they may be able to provide:

    • RHIOs;
    • County Public Health Agencies;
    • Continuums of Care;
    • Health Homes; and
    • PPSs or successor organizations to PPSs which may have retained DSRIP data.

    Intrepid Ascent has extensive experiencing in facilitating large multi-disciplinary stakeholder planning efforts at local, regional and state levels for the purposes of understanding key technology requirements as well as governance considerations related to data sharing and data privacy. Conducting technology needs assessments early on will have a great impact on planning efforts and can inform the infrastructure needs to be included in HERO applications for planning grants. Intrepid Ascent can also support organizations in technology selection activities for regions that lack the infrastructure needed to be successful under the proposed 1115 waiver.

     

    [1] Final NY DSRIP Evaluation Report 12/2021: https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ny/Partnership-Plan/ny-medicaid-rdsgn-team-dsrip-final-summative-eval-report-20211214.pdf

    The Importance of Health IT in Supporting Gender-Affirming Care 

    If you knew me, you would know that my gender identity colors my every interaction with the broader world. As we close out Pride Month, I would like to call attention to current initiatives and areas for improvement in healthcare IT to support inclusivity and provide better medical care to trans* and gender-nonconforming patients in a manner that makes patients feel validated. It is vital for patient care that data on sexual orientation and gender identity (SO/GI) be captured with enough variability in options to represent patient needs accurately and respectfully across the spectrum, but also identifiable and discrete enough to be useful in population health analyses. This way we can clinically identify trends among the LGBTQI+ population meaningfully, rather than ignoring the category or relegating them into the catch-all “Other”. This need is also being addressed in the upcoming USCDI v2 standards that will be required beginning in September 2022. 

    Some of the greatest value-add to patient experience for gender-diverse patients can be found through clearly specifying the name and pronouns to be used for a patient. It is highly important to include areas to capture and display these preferences, as not only does current name and pronoun usage affirm an individual’s needs, they are also “foundational to a supportive and meaningful relationship… and can be used to engage in supportive interactions” [1] and greatly improving patient experience. Establishing the capability to capture and display a patient’s preferred name and gender – especially in patient-facing items such as discharge documentation and wristbands – can be a major component in providing for a patient’s comfort throughout their experience with the medical system, generating affirming experiences between patients and their medical caregivers. To this day, I still think back to the first time I saw my true name reflected on a patient wristband and felt a surge of joy and comfort that was sorely needed. 

    I can speak far too well to the anxiety that mis-gendering and mis-naming can generate, not to mention the broader gatekeeping that can occur as patients begin to access gender-affirming care. These are even compounded by the sheer number of different individuals and providers that trans* patients must interact with regarding their care. Such experiences are not what we as an industry want to impart upon patients or to have them associate with their medical care. It is of the utmost importance that healthcare administration and IT capabilities are set up such that “the patient’s chosen name and pronouns should be used consistently by all health care staff. [As] using incorrect names and pronouns can be very hurtful, even when unintentional.” [2] If such practices are not already implemented at your organization, training videos and other resources on SO/GI are also available from the National LGBT Health Education Center” [3].

    As a gender-non-confirming individual working in this field, I understand the difficult problems that individuals like myself can present to the provision of adequate care. The medical records for the first 34 years of my life were all recorded using a name that I have done everything possible to erase from the world, and I do not pretend to think that this offers no barrier to my care. But these are problems with solutions which are worth addressing. The Gender Harmony Project is one initiative attempting to solve issues like I have described here. The project’s HL7 Gender Harmony logical model passed its first ballot in January 2021, and are currently targeting September 2022 for their second ballot with changes to V2, CDA, and FHIR support. The initiative is recruiting interested volunteers here. I encourage everyone in the industry to take a few moments to think about how diversity with gender and sexual identity may be better addressed within our work, and to make your own efforts towards progress. 

     

    [1] HealthIT.gov. “Patient Demographics. Level 2.” https://www.healthit.gov/isa/taxonomy/term/4591/level-2 

    [2] National LGBT Health Education Center. “Ready, Set, Go! A guide for collecting data on sexual orientation and gender identity.” Published June 29, 2020. https://www.lgbtqiahealtheducation.org/wp-content/uploads/2018/03/TFIE-47_Updates-2020-to-Ready-Set-Go-publication_6.29.20.pdf 

    [3] National LGBT Health Education Center. “SO/GI Data Collection Demonstration Videos.” https://www.lgbthealtheducation.org/courses/so-gi-data-collection-training/ 

     

    Intrepid Ascent Joins Civitas Networks for Health

    For Immediate Release 

    Intrepid Ascent Joins Civitas Networks for Health

    Intrepid Ascent is a consulting firm committed to improving health outcomes one community at a time through effective data sharing and use.

    Berkeley, CA – May 31, 2022 – Intrepid Ascent today announced it has joined Civitas Networks for Health, the largest national network of its kind. Civitas is comprised of member organizations working to use health information exchange, health data and multi-stakeholder, cross-sector approaches to improve health. Intrepid Ascent guides communities across the United States in identifying, adopting, and integrating technology tools to advance holistic care and health equity.

    “As a longstanding participant in SHIEC conferences and events, we are excited to solidify our relationship with Civitas,” said Mark Elson, CEO of Intrepid Ascent. “Just as SHIEC evolved through joining forces with NRHI, Intrepid’s focus has broadened over the past five years from health information exchange to broader community collaboration and the data infrastructure needed to support it. We look forward to engaging with Civitas and its members at this moment of tremendous opportunity for our field.”

    “Civitas Networks for Health is excited to have Intrepid Ascent join our national network,” said Civitas CEO Lisa Bari. “We are raising the voices of local health collaboratives and those providing critical services to support health transformation. We feel that Intrepid Ascent’s innovative work at the intersection of health and social services sectors closely aligns with our mission and goals.”

    About Intrepid Ascent
    Intrepid Ascent guides its clients through the terrain of digital transformation toward elevated community health. Engagements are led by one of its three Groups, with resources from the other two typically included to form an interdisciplinary team:

    • The Technology Strategy Group generates value through the entire technology adoption lifecycle: assessing needs and capabilities, architecting design options, managing procurements, and overseeing implementations – frequently bridging between communities and their multiple vendor partners.
    • The Policy Innovation Group provides insight to establish trust, transparency, and a problem-solving mentality at the heart of policy design and implementation – with industry-leading expertise on the application of data governance frameworks in cross-sector data sharing environments.
    • The Community Change Group utilizes design thinking, stakeholder engagement, change management, and quality improvement methods to guide technology design and adoption from the perspective of individual users and overall community impact – putting people at the center of transformation to improve health and social outcomes.

    To learn more, please visit www.intrepidascent.com.

    About Civitas Networks for Health 

    Civitas Networks for Health is a mission- and member-driven organization dedicated to using health information exchange, health data and multi-stakeholder, cross-sector approaches to improve health. It was formed in October 2021 with the affiliation of the Strategic Health Information Exchange Collaborative (SHIEC) and the Network for Regional Healthcare Improvement (NRHI). Civitas Networks for Health counts more than one hundred regional and statewide health information exchanges (HIEs), regional health improvement collaboratives (RHICs), quality improvement organizations (QIOs) and all-payer claims databases (APCDs) as well as more than 50 affiliated organizations as members and reaches approximately 95 percent of the United States population. To learn more, please visit www.civitasforhealth.org.  

     

     

    Data Exchange: Understanding for Action

    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

    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

    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

    “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/