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/

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.