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

PULSE: California’s Critical Health Data Backbone Needs Strengthening

Disclaimer: I am a member of the California Interoperability Committee (CIC), which is the governing body for PULSE. The following is solely my own opinion, and in no way represents the opinions of the CIC, the California Association of HIEs (CAHIE), or CalEMSA.

On March 26th the California Emergency Medical Services Agency (CalEMSA) announced deployment of the California Patient Unified Lookup System for Emergencies (PULSE) in response to the COVID-19 disaster. PULSE is an electronic, web-based system that allows disaster healthcare volunteers (DHVs), California Medical Assistance Team (CAL-MAT) members, and Medical Reserve Corps members to query for health information anywhere in the State based on a person’s basic demographic information. PULSE has been deployed multiple times on a limited basis in response to natural disasters in California since 2017[1], including the devastating Camp Fire, giving DHVs working at key shelter locations the capability to look up key health information such as medications and medical problem lists for individuals coming into shelter locations.

For COVID-19, PULSE is being deployed to give DHVs and CAL-MAT members – who are working at temporary hospital and other acute (and chronic) care sites being stood up all over the state – a way to find patient records. CalEMSA is also, for the first time, exploring how to make PULSE available to local public health departments in order to augment local resources for combating the pandemic. This expanded deployment of California’s critical disaster response health information exchange system will no doubt become an absolutely critical element of statewide COVID-19 response efforts. Unfortunately, as critical as this system is to the COVID-19 response, it is far from perfect because the data pipeline for healthcare information in California is weaker than it should be.

PULSE Technical Diagram, California Association of Health Information Exchanges (CAHIE), 2017

The PULSE system in California operates by “asking” Health Information Organizations (HIOs) in the State if they have any health information on a given individual based on basic demographics that a DHV enters into an encrypted, password protected web-portal. PULSE then presents any records that it can find in a portal viewer that allows users to retrieve a record that the system finds. HIOs are essentially local aggregators of healthcare information (in addition to providing many other kinds of services). California has at least 15 HIOs operating in the State, depending on how an observer defines an HIO (California does not have a statewide definition), with many operating at the regional level. Even with a broad definition of what constitutes an HIO, California has significant “Whitespaces” in terms of HIO coverage; meaning that some parts of the State do not have an aggregator of health information capable of connecting to PULSE. Some notable geographic whitespaces include the majority of the San Francisco Bay area, the Southern Central Valley, many of the Alpine Counties in the eastern part of the state, and much of the Sacramento Metro area. Of the at least 15 HIOs that do exist in California, nine are currently connected to PULSE, with a tenth in the process of finalizing the technical details of its connection.[2] Two of the connected HIOs are large commercial hospital systems (a concept referred to as an “Enterprise HIO” in California), which gives some degree of general statewide coverage (although these represent only two of the four major hospital systems in the State).

While critical to California’s disaster readiness, the PULSE system is not something unique to the state. Other states like New York have systems that operate much like PULSE but that are essentially always turned on and that contain information from nearly every hospital in the state, with few or no geographic whitespaces.[3] Others have adopted strategies to facilitate health information exchange by creating a single statewide HIO, such as Indiana, Arizona, and Washington, so that organization essentially accomplishes the primary use case of a system like PULSE on its own. New York and Indiana, in particular, have benefited tremendously both from an acute care standpoint as well as a public health standpoint from being able to exercise their statewide systems nimbly in the current emergency.

As California begins to exercise the use of PULSE at state-designated emergency sites, individual counties should begin to determine how they can best exercise this new resource. The new use-cases for use of the system in response to COVID-19 that CalEMSA is currently exploring may become critical tools both now and in the future for local disaster and emergency response, but they will need help from those on the front-line at county agencies to understand what all of those use-cases may be. And perhaps even more critically, the entire healthcare community should think about how it can make PULSE a better resource for a broader set of critical, front-line workers in this crisis and future crises. While this period of experimentation and expansion of the PULSE system is much needed, both in the context of the current crisis as well as for general disaster response and preparedness, it is unfortunate that those on the front line need to work with a system that does not reliably allow for access to information for a large proportion of California residents.

The reasons for the incomplete HIO landscape in California, and therefore the limited data density of PULSE, go back over 25 years – but the reality at this point is painfully clear: the current disaster response data infrastructure for accessing healthcare data in California is incomplete and not nearly as functional as it is in similar states, like New York. The efforts of CalEMSA and the HIO community to design, test, implement, administer, and leverage PULSE have been incredible given the political and financial headwinds that they have faced in California – but the state needs to do better. There are steps that can be taken in the current crisis, like connecting HIOs that are not currently on-boarded to PULSE, to improve the system. And there are steps that can be taken to prepare for the next crisis, like filling-in the HIO whitespace in California – something that can be done with the right political will.

Politics and history aside, California owes it to its residents to provide the best emergency response infrastructure it can, and that means finding creative ways to use what we have now, and to make sure that next time it is the best system that it can be.

[1] Sanborn, B. “Emergency Responders to California Wildfire Used a Patient Lookup System to Harness Volunteer Providers” Healthcare Finance, December 2018: https://www.healthcarefinancenews.com/news/emergency-responders-california-wildfire-used-patient-lookup-system-harness-volunteer-providers

[2] California Association of Health Information Exchanges (CAHIE): https://www.ca-hie.org/initiatives/pulse/

[3] New York eHealth Collaborative: https://www.nyehealth.org/shin-ny/what-is-the-shin-ny/

Lab Data is the Gold Standard

 

As Federal, State, and local public health agencies mobilize to respond to the COVID-19 crisis, they are looking to sift through the noise of data available to them to determine how best to plan for the acute management of infected individuals. While data infrastructures across the country handle a variety of different types of data that can potentially be helpful, the single piece of data that is most useful by far is the result of approved COVID-19 testing – the lab result. No other piece of information is as timely, definitive, or specific (from a data quality and completeness standpoint) as a simple laboratory test result. Lab test results are the place where documentation of a positive COVID-19 case will originate in a definitive way – they contain demographic and geolocated information about the individual being tested, and also where that person is seeking treatment (in the form of the ordering provider for the lab test).

 

Unfortunately, this fact is a major problem for a coordinated, data-driven response to COVID-19 in the United States, given significant gaps in the sharing of lab results between key players in the US healthcare system. The implementation of electronic lab data interfaces by public health departments and key data aggregators such as Health Information Organizations (HIOs) is uneven across the national landscape. With the exception of the major reference labs like Quest Diagnostics and Labcorp, the majority of lab results delivery is still done on paper, via fax, a fact that is especially true for public health labs – which are performing the majority of COVID-19 tests to date. Related gaps and bottlenecks in the routing of lab data make it challenging for public health agencies and health care providers to gain access to accurate information on who has COVID-19 and who does not.

 

Diagnosis codes (generally in the form of ICD-10 codes), entered by health care providers into their electronic health records when they make a diagnosis, would seem to present an alternative to lab results for monitoring COVID-19 cases, due to the more universal health care focus on electronic sharing of diagnoses. However, there are three primary obstacles to this approach. First, diagnosis codes currently in use for COVID-19 range from temporary CDC guidance to use a combination of existing ICD-10 codes, to a special World Health Organization ICD-10 code that is being adopted on a region-by-region basis, since it has not gone through the official balloting process for the US healthcare system. Thankfully, an emergency update to ICD-10 with a single diagnosis code for COVID-19 was recently announced for April 1 by the CDC that should help to alleviate this problem.[1] Second, a diagnosis depends on a health care provider actually encountering an individual patient and entering a code (or a combination of codes) – diagnoses rarely if ever are automatically triggered in EHR systems based on the status of a COVID-19 test result. This means that even when they diagnoses are specific enough to be used for syndromic surveillance or other types of monitoring, they are often not timely and skew toward availability for patients that have been hospitalized. Third, many public health departments don’t have ready access to clinical diagnoses anyway, and they often don’t fully trust the data given the issues above.

 

In contrast, they do trust lab data, as it has been largely consistent for COVID-19 testing across the country and stands to be reinforced as the large reference labs come online and implement their LOINC code-sets (which look to conform to what is already in wide use).[2] Unfortunately, lab data is not as cleanly routed through the health data ecosystem as diagnoses are. This is partially due to the fact that electronic interfaces to route these data have generally not been prioritized by States and HIOs, but also due to the fact that key parts of the laboratory ecosystem remain paper-based. Most COVID-19 tests have so far been processed by public health labs, which exist either at the State or local level in most cases – although some States are much more complex and may have many more public health labs than others (New York has two, California had 32[3] listed as of 2018…all at the local or regional level). The vast majority of these labs remain paper-based, and report lab results back to the ordering provider via fax (who then keys the result into the patient’s electronic health record). In some cases, as in both California and New York, the public health labs even report test results on paper or via a secondary data entry method[4] to the public health departments responsible for tracking and managing disease outbreaks like COVID-19. This situation is partially a result of our historical underfunding of public health systems, who have not prioritized electronic laboratory results delivery.

 

Typical “Flow” of Laboratory Results Data, Public Health Labs

 

It is important to understand that in both the commercial laboratory world and also the public health laboratory world, test results are mainly intended to be delivered to the ordering provider – the individual (or facility) that actually ordered the test. Reporting to public health departments for syndromic surveillance sometimes falls on the labs themselves, and sometimes on the ordering provider – something they are supposed to do once they get back the lab result. In some cases, lab results can be sent to a “CC’ed” entity (maybe a public health lab, maybe an HIO) – but this rarely happens outside of the commercial reference labs, since public health labs often lack the resources to send out multiple copies of an individual lab result (especially if they are pushing results out via fax). So in order for public health lab test results to get to State and local public health agencies as well as to aggregators like HIOs, the data is often circuitously routed to ordering providers via fax, who then need to key the information into their EHRs for it to get picked up and reported out to other systems.

 

Reference labs like Quest Diagnostics and LabCorp, on the other hand, often send their results to the ordering provider electronically, and are in some geographies CC’ing HIOs on lab results. While these and other reference labs are still working on implementation of COVID-19 testing, their entry into the space will vastly increase the degree to which electronic lab results for COVID-19 testing are being delivered to both providers and HIOs, in places where an electronic results delivery connection already exists.

Typical “Flow” of Laboratory Results data, Reference Labs

 

The key gap, even with the reference labs, is that HIOs and public health departments are not always on the CC “List” for lab results originating from the reference labs – impeding their ability to utilize this extremely valuable data resource to manage the COVID-19 crisis. In cases where they are, such as in Indiana[5] and New York, HIOs are playing a significant public health role as a de-facto repository of COVID-19 test results, or in the Indiana case, as a centralized alerting service that triggers when a new positive result comes in. But in places where they are not (e.g. many parts of California) they may only be doing so on a comparatively small scale.

 

While we cannot go back in time and fix this issue, we can work to remedy it in the present. HIOs, States, labs and public health agencies should all be building and enhancing current lab data interfaces now. Focusing on less high-fidelity data like diagnosis codes or admit, discharge, transfer data just because it is currently available is not a substitute for getting access to the gold standard for COVID-19 cases. Models like Indiana’s already exist for integrating this information more broadly, and should be replicated wherever possible.

 

[1] Centers for Disease Control and Prevention, March 2020: https://www.cdc.gov/nchs/data/icd/Announcement-New-ICD-code-for-coronavirus-3-18-2020.pdf

[2] LOINC Codes: 31208-2, 75325-1, 94309-2

[3] California Association of Public Health Laboratory Directors, May 2018: http://websites.networksolutions.com/share/scrapbook/74/745076/Laboratory_Listing_Report.pdf

[4] These systems are often a basic web portal that require some degree of demographic information to be entered along with a positive test result LOINC code. They do not transmit a copy of the lab result in any kind of structured, encoded data format and are often very light on the level of information that is required in order to actually submit a case.

[5] Raths, David “Some HIEs Stepping Up to Play Key Role in COVID-19 Response,” March 2020: https://www.hcinnovationgroup.com/interoperability-hie/health-information-exchange-hie/article/21130588/some-hies-stepping-up-to-play-key-role-in-covid19-response