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 

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.

California’s Health Information Exchange Landscape


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

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

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

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

A Grand Bargain on HIE in California

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

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

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

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

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

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

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

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

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

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

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

 
 

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

A holiday message from Intrepid Ascent

As with so much else, 2020 has thrown our love/hate relationship with technology into relief, as technology tools mediate our lives more than ever. Parents lament that the screens are winning, while Zoom fatigue plagues the professional world. In an act of capitulation I ordered blue-light glasses as stocking stuffers.

But for all of our complaints, imagine sheltering in place without the internet. Would any of us choose that if we actually could? The quarantine would be far less successful without virtual commingling, as our natural urge for social interaction would drive us out to be with each other. The professional sectors of the economy would have crashed like restaurants or brick-and-mortar retail. You would not be reading this.

A staff member that we hired in August has never met the rest of our team in person, but she recently shared that she doesn’t feel a lack of connection. When I heard this I realized that I now take for granted the fact that we’re a remote team with meaningful human interactions every day. We see each other. We talk, listen, and laugh while getting the work done. Communication technology at its best disappears into a transparent medium for engaging with one another.

As we head into the holidays this year, many of us will miss gathering with family and friends under one roof to brighten the long nights, to exchange gifts, to have unexpected conversations. And although we’ll attempt variations of family reunions by webinar, this is where virtual togetherness breaks down, the medium doesn’t match the moment and it will not be the same. But the holidays this year do present a rare opportunity: to turn inward, to listen to ourselves, to hibernate a bit in the depth of winter. If we step away from the screens and let the hours roll by we may be surprised by what we find.

When we emerge into the winter sun of 2021, rub our eyes and look around, with vaccines on the way and new residents moving into 1600 Pennsylvania Avenue, we’ll be grateful for what’s next, ready to greet our colleagues’ smiling faces through whatever medium we can.

So refresh and restore this holiday season, and we look forward to reconnecting with you in 2021 to make it an amazing year.

Do we still care about COVID-19?

The other day, as I struggled to take in all the news, I found myself asking this question. And honestly I didn’t know the answer.

This Spring, when COVID suddenly seemed to have the world by the throat, it was almost all we thought about. But much has happened since then beyond the quarantine and social distancing and work and school and life from home. First the public outcry over police brutality across the country, and then lightning strikes that lit up the West. Each of these crises has been years in the making: crippling underinvestment in public health, enduring racial inequities, and a hotter, drier West due to climate change.

Together, this trio of COVID, inequality, and deteriorating environmental conditions has us down, and they feed on each other in pernicious ways. African Americans and Latinos experience dramatically higher mortality rates from COVID than whites; public health authorities and health care providers struggle to respond to traumatic events on multiple fronts; the effects of smoke exposure resemble and potentially mask COVID symptoms, and there are no longer massive shelters for people fleeing fires (no hugging, no dining-halls, etc.).

While each of these crises is a wake-up call, and they are more so together, where do we focus our attention? For many, the answer depends on the ease of accessing meaningful information in the moment. Everyone I know here in California, including my kids, has been checking air quality index numbers online every day for much of the past month. The AQI number for our current location, for our parent’s town, for nearby cities. It’s all so simple and user-friendly, a single number. In the spring, many of us monitored the COVID numbers, looking at the Johns Hopkins COVID Dashboard and state- and county-level figures. But these are more complicated than a single air quality number. 

Moreover, many Americans have rightly lost faith in the validity of the COVID figures they are presented with given our industry’s failure to accurately monitor COVID cases. Shame on us. Some important progress has been made, but with millions of rapid antigen tests now being distributed with no way to collect and synthesize many of the results, we will still be flying blind.* This lack of trusted data makes it very difficult for policy-makers to weigh risks and opportunities for us as a society, for local public health authorities to effectively intervene, and for us as individuals to make informed decisions about our own actions.

Staring at the dark orange sky over my house in the Bay Area a week and a half ago, COVID-19 was far from my mind. But I still wore a mask every time I left the house. Now that blue skies are back, normal life is resuming and we can breathe deeply. Normal life in a COVID world, that is, for a well-off white man like me. Many people seem willing to make the following level of trade-offs: masks, hand sanitizer, limited social gatherings outside, no baseball games, no kids’ sports (this is changing), school from home (now with pods), no bars or clubs, limited carpooling, no international flights but some travel across state lines, occasionally sit outside at a restaurant… and the corresponding number of sick, the number of deaths, do not impact most of us personally. We are not experiencing a 2% death rate among our circle of family and friends (of the 300 people closest to you have 6 died?). We are not seeing Italy or New York horror scenes in our hospitals. So we have come to accept this unprecedented but seemingly manageable level of trade-offs as it stands today, even as we mingle with others who are taking far fewer precautions. Based on our actions, we sort-of care about containing COVID-19.

Without a change in approach conditions are likely to deteriorate as we head into winter, exacerbating the long-term impacts of social distancing on our mental health and economy. And the hope for a vaccine – which I desperately share – increasingly acts as a seductive moral hazard in this environment: the more we believe that a vaccine will save us soon, the less accountability we feel to limit the spread of COVID today. As Dr. Fauci and others have begun to warn us, we will likely be living in quarantine conditions well into 2021. Even when we have a vaccine, it will not deliver us in a stroke of scientific brilliance. Rather, vaccinating the country, let alone the world, will be a slow and patchwork and messy public health mobilization, with inequitable access and imperfect information. So expecting someone else to save us – like big pharma – is not a viable strategy for how to live today.

But in a few weeks there will be an event that gives us as individuals a direct opportunity to participate in the collective will, to shape how we respond as a country to the trade-offs presented by COVID and to the momentous events of 2020 more generally. Please search your soul, talk to your friends and family, and review the numbers. Then cast your vote.

 

*Modern Healthcare. Lack of antigen test reporting leaves country ‘blind to the pandemic.’ September 16, 2020. As this article explains, rapid antigen tests produce results in minutes on-the-spot and outside of the nation’s lab networks. Many organizations administering these tests do not have an easy way to send results to public health authorities. This contrasts with PCR tests which are sent to labs that return results to ordering providers and public health databases in a matter of days.

Uncertainty and Innovation

 “The systemic frustrations are the most exhausting…Today, we ran out of oxygen masks for the patients to use. So much work goes into trying to locate and obtain more. We had a shortage of oxygen tanks, so we connected more than one patient to larger tanks – stuff we normally wouldn’t do. Will we run out of masks entirely? People can give you answers, but they are not witnessing what is happening in front of you. People can tell you it will be O.K., and it is solvable, but this has never happened before.” These are the words of Dr. Hashem Zikry, an intern in the emergency-medicine residency program at Mount Sinai Hospital in New York City currently serving a six-week rotation at Elmhurst Hospital in Queens.[1]

People can tell you it will be O.K., and it is solvable, but this has never happened before. The coronavirus is a black swan, to use the title of the book by Nassim Nicholas Taleb[2] on the dramatic impact of highly improbable events. A sense of uncertainty is pervasive today in the wake of this black swan, as standard models for understanding public health, the economy, and social relations have broken down. In health care, best practices for evidence-based medicine are in flux. To quote Dr. Zikry again, “‘We ourselves are so confused and scared, and every day when we come on shift it seems like there’s a different protocol,’ – the guidance comes from the state Department of Health – ‘for who are we testing, who are we admitting.’”

Leaders in other spheres find themselves in similar circumstances. Prime Minister Mark Rutte of the Netherlands recently noted that leaders today “have to make 100 percent of the decisions with 50 percent of the knowledge, and bear the consequences.”[3] This can be hard for the public to hear at a time when people seek clarity. We want our doctors to calmly make definitive diagnoses, our hospitals to follow proven procedures, and our policy-makers to make decisions based on facts for the collective good. We’re looking for expertise (just look at the widespread popularity of, and sympathy for, Drs. Fauci and Brix), while the experts are saying back to us: we don’t know.[4]

But we are learning fast. The amount of new information being generated and circulated and absorbed today is shockingly high. The ineffectiveness of long-established norms in the face of the coronavirus has unleashed improvisation and innovation, from connecting multiple patients to an oxygen tank to the race for a vaccine to new social practices, and lives are at stake along every link in the chain. As challenging as this has been, it is also freeing, with new questions emerging as we acknowledge the limits of our understanding.

This is how science works, including medicine. Science is humble. A hypothesis or a diagnosis, however well-informed, is not dogma. It must be adapted as new data emerge and as new frameworks for interpretation replace older models. The same is true for any evidence-based protocol or best practice enshrined in policy. These are all artifacts of informed adaptation in an uncertain world.

Some people and organizations and countries will be more effective than others in responding to uncertainty with impactful innovation. Leaders with epistemological modesty, like the Prime Minister of the Netherlands, are best prepared to manage the changes of our time through their responsiveness to new data and ideas. The same is true of clinicians like Dr. Zikry, acutely aware of what they don’t know.

Those of us working in health information technology have a unique obligation to equip these decision-makers with the best information possible. Action cannot wait. We must redouble our efforts to improve data-sharing and analysis to enable the next life-saving clinical decision, the next enlightened policy, and the next brilliant insight that changes everything, again.

[1] Galchen, Rivka, “The Longest Shift,” The New Yorker. April 27, 2020.

[2] Taleb, Nassim Nicholas. The Black Swan. Random House. 2007.

[3] NLTimes, March 12, 2020.

[4] Budasoff, Eliezer, “No Estamos Listos Para El Incertidumbre,” El País, April 25, 2020.

The Calm Before The Storm

The coronavirus has unleashed a series of paradoxes into our lives. We show solidarity by staying apart, with the belief that young people meeting for brunch endanger elders in rest homes. We cease gathering around dinner tables, while hiking trails are packed not with seekers of solitude but with seekers of social connection (for as long as parks stay open). Waiters have lost their jobs, grocery-store clerks serve on the front lines, and there is no traffic on the Bay Bridge.

It is shocking how quickly we have adjusted to this new normal. At Intrepid Ascent, we’re as connected to each other as ever before even though no one has been in the office for two weeks. Most people I know are having more conversations with family and friends, gathering for virtual chats and checking in through an expanding circle of group texts. People are finding ways to help each other navigate dramatically altered times.

Amid these revolutions in daily life, there’s an eerie sense of calm before the storm in health care. Yes, the planners are busy planning and needed space and equipment are being considered, counted, ordered, set aside. But at least here in California, Emergency Departments and Urgent Care centers are relatively quiet. A large medical center nearby has actually emptied out, keeping doctors and patients at home and as healthy as possible in anticipation of the coming waves of very sick people needing intensive care. And many potential patients are themselves reluctant to visit health care settings, which are perceived to be hot-spots for COVID-19.

So we’re rationing health care, both consciously and unconsciously, on a vast scale in response to the crisis. Not yet in terms of which lives to save with a respirator or bed in the ICU, but in terms of who gets tested and receives sustained professional attention. Given the botched testing regime in the US to date, people with COVID-19 symptoms who do not seem to require immediate intensive care are told that while they probably have the virus, they will not be tested, nor will their contacts be traced. They should stay home and follow the guidelines, no matter how many others they live with or how porous the quarantine.

When such a diagnosis of COVID-19, whether remote or in person, is entered into an individual’s electronic health record, it will be coded in a manner that can be shared and communicated widely beginning April 1, thanks to an unprecedented update to diagnostic codes (which otherwise occurs on on annual basis, in October). Nevertheless, as our post on lab data explains, there is a disconnect between clinical and public health databases, and a diagnosis alone will not usually trigger public health to count an individual as an official COVID-19 case. Public health agencies are relying on positive lab test results for that, and we’re not testing nearly enough. So, in this very basic way – knowing who has the virus and who doesn’t – we’re in a fog. Thankfully, bright spots are emerging with the creative use of software tools by front-line staff to assess risk factors for COVID-19 and to coordinate services for vulnerable populations such as the homeless; and the engines of Silicon Valley innovation are revving up.

As the coming storm crashes into our imperfectly prepared institutions, we will need all of the tests, N95 masks, hospital and ICU beds, respirators, courageous medical staff, brilliant data scientists, and enlightened policymakers we can find. But also resilience, empathy, and ingenuity from the rest of us. Staying home and watching Netflix will not be enough. In Wuhan, in addition to aggressive testing and other measures to track and isolate the virus, “many people idled by the lockdowns stepped up to act as fever checkers, contact tracers, hospital construction workers, food deliverers, even babysitters for the children of first responders.”* An outbreak of common spirit is evident all around us, and I am confident that as the challenge deepens, so will the response. Let’s get ready.

*McNeil Jr., Donald G. “The Virus Can be Stopped, but Only With Harsh Steps, Experts Say,” The New York Times. March 22, 2020.

 

 

Coding the Coronavirus

Note: CDC has released an emergency update announcing that there will be a single ICD-10 code for COVID-19 as of April 1, much earlier than the annual ICD-10 updates in October as stated below. The announcement is here. All relevant IT systems should be prepared to update to this new code and staff should be trained to use it. This change will increase the reliability of diagnoses data as an important counterpoint to lab data (see our post above, “Lab Data is the Gold Standard.”

As developments over the past several days have made clear, monitoring and addressing the coronavirus effectively will require consistent documentation of cases as they emerge, and accurate sharing of this information across organizations and IT systems. To this end, the CDC’s National Center for Health Statistics has announced that it will implement a new ICD-10-CM diagnosis code for the 2019 Novel Coronavirus (COVID-19), effective with the next update on October 1. 

In the meantime, the CDC released interim guidance for the coding of encounters related to coronavirus. We recommend that you confirm that your ICD-10 code sets include the codes in this interim CDC guidance, and that you begin relevant staff training on documenting COVID-19 in accordance with these guidelines as soon as possible. Local public health authorities may issue further notices and requirements in the days ahead, so be on the lookout for those as well.

In addition to accurate public health reporting, accurate health information exchange among providers and labs will be critical for communities to stay ahead of COVID-19 through effective treatment of individuals, coordination across organizations, and population monitoring.

Coding scenarios covered in the CDC interim guidance include:

  • Pneumonia case confirmed as due to COVID-19
  • Acute bronchitis confirmed as due to COVID-19
  • A case with COVID-19 documented as being associated with a lower respiratory infection, not otherwise specified or an acute respiratory infection, not otherwise specified
  • Acute respiratory distress syndrome developed in conjunction with the COVID-19
  • Cases where there is a concern about a possible exposure to COVID-19, but this is ruled out after evaluation
  • Cases where there is actual exposure to someone who is confirmed to have COVID-19

Thanks to the courageous front-line health care and public health workforce responding to the virus, and to everyone else supporting them with the information, training, and tools necessary for them to succeed – for all of our benefit.