JULY 2021 Q&A Learning from the History of Statewide Health Data Exchange An interview with Dawn Gallagher, former Maine director the beginning, the program faced challenges, includ- of health information technology and national expert ing a lack of guidance at the state level, federal delays in setting national standards, leadership turnover, and other organizational hurdles. California's statewide data T he COVID-19 crisis has sparked calls for a state- exchange efforts would ultimately end in 2014, with the wide health data network to assist with emergency end of the Office of the National Coordinator for Health response and public health efforts. The problem Information Technology (ONC) Cooperative Agreement is that health data do not flow across large areas of funds, part of the HITECH Act that provided funding California, access to patient records is limited and frag- for HIE. The state's inability to overcome its challenges mented in areas where sharing does happen, and many would eventually lead to a continuation of the mostly kinds of health records are left out. (See the California uncoordinated system of regional health information Health Care Foundation [CHCF] report Designing a organizations (HIOs) that remains in place today. Statewide Health Data Network: What California Can Learn from Other States.) We asked Dawn Gallagher, a national expert on state- wide data exchanges, to outline what she learned California policymakers are taking a significant oppor- after reviewing literature and interviewing some of the tunity to improve the state's fragmented regional stakeholders who played critical roles in the design and data-sharing efforts and become a model for the country. implementation of California's statewide efforts from California Governor Gavin Newsom's budget proposal 2009 to 2014 (See below for a list of interviewees.). We and the budget passed by the Legislature includes $2.5 share Gallagher's answers to key questions about that million to develop health information exchange (HIE) effort, which policymakers and other stakeholders can leadership within the state. There is also active legisla- consider to reform HIE today. tion seeking to advance HIE in the state . Together, we should use past lessons to plan and build successful data exchange initiatives for the future. But California has been down this road before, with a failed attempt Q  Why and how did statewide health information exchange initiatives get started in California just over 10 years ago? to create a statewide data exchange that ended nearly The big impetus for statewide data sharing then was a decade ago. Policymakers would be well advised to the availability of $48 billion in national grants, loans, examine the factors that stymied earlier efforts. and incentives in 2009 to rapidly accelerate health data exchange from the HITECH Act, part of the American Though HIE in California started at a regional level Recovery and Reinvestment Act (ARRA). The federal in Santa Cruz in 1996 (See A Timeline of Health Data program provided significant funding for health care pro- Exchange in California.), statewide HIE efforts began in viders to implement and use Electronic Health Records earnest just over 10 years ago. In 2009, a scaled initiative (EHRs) and for states to facilitate the implementation of to create a statewide system of data exchange began Health Information Exchanges where data from EHRs when the state received more than $100 million in fed- would be sent to and then exchanged with other provid- eral funding as part of the Health Information Technology ers' EHRs. To receive these federal funds, states needed for Economic and Clinical Health (HITECH) Act. From to demonstrate their ability to effectively use planning and implementation dollars to advance programs known The effort faced immediate hurdles gaining participation variously as HIE and health information technology (HIT). from stakeholders, especially from payers, who feared that they could be subsidizing a competing system and States were encouraged to name what was called a state- that agreements would require them to share patient designated entity (SDE) as well as a state coordinator to data with potential competitors. The deputy secretary of lead statewide data exchange efforts. In 2009, SB 337 health IT guided an extensive strategic planning effort (Chapter 180 of 2009) charged the California Health and with input from more than 600 stakeholders. The process Human Services Agency (CHHS) or a nonprofit entity with resulted in a detailed strategic plan in October 2009 that a 22-member board to develop a plan to ensure that HIE emphasized consensus over regulatory authority to com- capabilities are available, adopted, and utilized statewide pel participation and compliance. so that patients do not experience disparities in access to the benefits of this technology. In an effort to overcome the resistance, California ulti- mately adopted a mostly decentralized model, which The agency elected to lead an extensive and inclusive emphasized support for regional HIOs with a limited planning process and to select a nonprofit entity to serve number of centralized coordination functions. It reflected as the SDE to deliver on the plans. Per the requirements a model that some other states chose for many of the in the statute, the board for this nonprofit entity would be same reasons. In California, the federal government made up of two legislators, two officials from CHHS, and awarded pass-through funds to regional HIOs to pro- 18 private health care industry and provider members. vide data exchange services locally. The data model laid California issued an RFP for an SDE and two nonprofit out in the plan included two important components: 1) organizations merged to form Cal eConnect, which was a decentralized data exchange dependent on techni- ultimately selected to fill this role. cal standards to be set by federal regulations, and 2) a limited set of centralized infrastructure to provide shared Two years earlier, California's then-governor, Arnold statewide services, to be delivered by Cal eConnect. Schwarzenegger, issued an executive order that called for "100% electronic health data exchange" within 10 Delays at the federal level in offering guidance on tech- years. In early 2009, the governor appointed a deputy nical and operational data standards slowed progress secretary of health IT within CHHS, who ultimately served toward developing a decentralized model of exchanges as the state coordinator and led the planning to coor- that were "interoperable," meaning that systems share dinate health data exchange activities across California, the same language in order to talk with each other. participated on the SB 337 governance board, and con- With no federal standards and no clear state guidance vened an advisory board to provide guidance. beyond direction to access federal HITECH funds, the Cal eConnect board struggled to achieve consensus1 In the end, these efforts brought in more than $100 mil- about its mission. lion in federal funds. California's plans relied primarily on federal funding; policymakers did not appropriate state Cal eConnect also was plagued with leadership chal- funds for the HIE program. lenges. Its first chief executive officer (CEO) left in August 2011 after about 14 months on the job. Following a long Q  Cal eConnect ultimately shut down in 2012 and California was left with a patchwork of regional HIOs. What were some of the dynamics that shaped the search for a new leader, the organization announced a new CEO in March 2012. Two weeks after agreeing to take the job, the new CEO withdrew. As a result, a Cal outcome of the initiative? eConnect board member stepped into the role on an On the whole, California's approach reflected com- interim basis until a permanent CEO could be hired. promise and fell victim to lagging federal policies and leadership challenges. 1.  David Gorn, "After 2 Years of Cal eConnect, What's Next for HIE in California?," California Healthline, May 29, 2012. California Health Care Foundation www.chcf.org 2 In May 2012, after centralized services were announced Third, state leaders in charge of HIE were never granted but no contract was awarded to provide them, the Cal authority to regulate HIE participation and the exchange eConnect board announced that the best way to move of data. CHHS created a deputy secretary for health IT more quickly to advance HIE in California was to turn position to be a convener and facilitator of HIE efforts. over the programmatic work to an organization, the The law that required CHHS to apply for federal funding Institute for Population Health Improvement (IPHI) under did not explicitly give CHHS regulatory authority over the the University of California, Davis Health System, with an HIE program. The authority over HIE participation was administrative infrastructure equipped to handle it. UC based on individual participant agreements, which were Davis administered the regional HIO grants and pro- entered into voluntarily. vided education for providers to identify base features and standards of EHR systems. Finally, the program relied exclusively on federal funds, with no plan to achieve financial sustainability with The state also faced leadership challenges. As part of the state and private funding over the long term. Unlike gubernatorial transition from Governor Schwarzenegger most states that developed statewide HIEs, California to Jerry Brown in 2011, the original deputy secretary for did not invest state dollars in starting or sustaining the health IT, who had been instrumental in the development health data exchange. The law that created Cal eCon- of the strategic planning that created Cal eConnect, left nect established a dedicated HIE fund but stated that state government, which created a leadership vacuum the fund would consist only of federal funds, private con- at the state level. Without enduring leadership or com- tributions, and revenues generated from self-sustaining mitment from the state, these statewide HIE efforts participant fees. When federal funding ended in 2014, essentially ended when federal funding for HIE under the California's efforts to enable statewide HIE efforts ended HITECH Act ended in 2014. as well. Outside of California, some states that estab- lished strong state leadership with state financial support Q   What policy decisions at the time prevented suc- cess that policymakers should reconsider today? According to interviewees, there were at least four key were able to sustain their programs after dedicated HIE federal funding stopped. decisions that led to the dissolution of the efforts to establish statewide HIE. Q  You also wrote a report for CHCF about lessons learned from states that have been successful in implementing statewide HIE. What are some lessons First, and most critically, policymakers failed to pro- learned from that research that you can apply to these vide clear and enduring statutory policy direction. challenges? Commitment to data exchange changed with each A critical lesson from that work is that states with suc- administration. Meanwhile, the state legislature gave cessful HIE initiatives took a comprehensive, statewide, little direction about how statewide HIE would ben- long-term view in developing their programs. They use efit Californians if it were implemented well or how to a mix of funding streams, including federal, state, and achieve the goals, objectives, and milestones related to participant fees. HIEs that have relied on federal fund- the federal funds that the state received. The California ing alone have not been sustainable. Investing state legislature never formally endorsed the program's strate- funds alongside federal and private funds demonstrates gic and operational goals. What's more, a new governor a state's commitment to health data exchange and can and his team did not embrace HIE as a priority. This produce better results, as public and private entities both - combined with no enduring statutory guidance - have a stake in the outcome. doomed the program to failure. Another lesson is the importance of strong state leader- Second, the state relied on the federal government to ship in setting a clear vision and priorities. That leadership implement national standards, and when the standards requires rulemaking authority, contractual enforcement did not materialize in the time frame envisioned, state ability, and/or a way to compel the exchange of data leaders did not step up to address that void. statewide. It also requires the state's Medicaid agency Learning from the History of Statewide Health Data Exchange www.chcf.org 3 to be closely involved in the leadership structure as a Medi-Cal (CalAIM) program, propose broad reforms to requirement to apply for and receive federal funding for delivery systems, programs, and payments across the HIT and HIE projects. Medi-Cal program, including the integration of social determinants of health, behavioral health, and clinical Q  Nearly a decade after the end of the effort to establish statewide data exchange, California policymakers and stakeholders are now trying again. data. The person-centric care envisioned can only be accomplished with advanced HIE that connects patients and their entire health team. Why should they expect things to work out differently this time? Several factors make this moment much more promising than a decade ago. For one thing, the technology land- Q  What should policymakers and stakeholders keep in mind in the future? As California policymakers and stakeholders discuss scape is vastly different than it was when the HIE program expanding statewide HIE efforts, substantial federal started in 2009. Then, less than a quarter of providers funding is available under ongoing CMS programs, as in California had adopted EHRs whereas in 2017, that well as through the recent Coronavirus Relief Act and the figure rose to over three-quarters and 97% of California American Rescue Plan Act. These funds can be used to hospitals reported using certified EHRs. What's more, as build out public health infrastructure, HIE, HIT, and broad- of February 2020, more than $1.7 billion in federal incen- band in rural areas. Broadband, in particular, is a barrier tive payments had been made to California, contributing to HIE expansion statewide, as it is needed for telehealth to the significant growth of EHR use and data exchange. and to exchange health care records. Additionally, new federal requirements for interoperability, information Although the federal government did not issue technical sharing, and patient access provide opportunities to and operational standards for interoperability between expand the use of HIEs to meet federal mandates while EHRs before its grant program ended in 2014, the Office minimizing costs to individual health plans and payers, of the National Coordinator for Health Information which would otherwise have to build and connect these Technology and CMS jointly issued rules in 2020 that systems on their own. are changing the HIE landscape in broad ways. The rules require health plans and systems to exchange patient There is notable activity in the legislative and executive data without blocking information from other provid- branches of California government, focused on provid- ers and require certified EHRs to be interoperable. CMS ing opportunities for the state to see the original goal of rules also require Medicare, Medicaid, and other federal statewide HIE come to fruition. The state budget includes payers regulated by CMS to allow patients easy access $2.5 million to the California Health and Human Services to their claims and clinical data within the claims, using Agency to develop a framework that includes a single an electronic device of their choosing, through what is data sharing agreement and common set of policies and known as a patient access application programming procedures that will govern and require the exchange interface (API). These mandates will require Medicaid of health information among health care entities and programs, public marketplaces, health plans, and payers government agencies in California. Two HIE bills were in California to implement new systems and standards introduced this year, were held in committee, and can that will expand data exchange statewide. be considered again next year. Together, these activities provide an opportunity to clearly articulate a long-term Unlike a decade ago, public and private stakehold- vision for a statewide health data exchange and create ers increasingly understand the urgent need for data enduring policies. exchange. The COVID-19 pandemic has brought to the forefront the lack of statewide data exchange for emergency response and public health. Major state ini- tiatives, such as the California Advancing and Innovating California Health Care Foundation www.chcf.org 4 Interviewees About the Foundation Linette Scott, MD, MPH The California Health Care Foundation is dedicated to Chief medical information officer advancing meaningful, measurable improvements in the Department of Health Care Services (DHCS) way the health care delivery system provides care to the people of California, particularly those with low incomes Jonah Frohlich and those whose needs are not well served by the status Managing director quo. We work to ensure that people have access to the Manatt Health Solutions care they need, when they need it, at a price they can Robert (Rim) Cothern afford. Executive director California Association of Health Information CHCF informs policymakers and industry leaders, invests Exchanges (CAHIE) in ideas and innovations, and connects with changemak- ers to create a more responsive, patient-centered health Mark Elson, PhD care system. Principal Intrepid Ascent Learning from the History of Statewide Health Data Exchange www.chcf.org 5