Designing a Statewide Health Data Network: What California Can Learn from Other States MARCH 2021 AUTHORS Sandeep Kapoor, JoAnne Hawkins, and Dawn R. Gallagher of HealthTech Solutions Contents About the Author 3Executive Summary HealthTech Solutions (HealthTech) was formed with a vision of supporting federal and state 8Introduction government agencies and health information 10A Brief History of Health Data Networks exchange organizations with consulting and technical services to develop and implement state- 10New Federal Rules Create an Opportunity of-the-art technology solutions and practices. Since for California to Act 2011, HealthTech has been providing services to state Medicaid and Health and Human Services 11Four States with Robust Statewide Health agencies, Fortune 500 companies, and agencies Data Networks within the US Department for Health and Human 19A Framework for Success Services. Authors include Sandeep Kapoor, presi- dent; JoAnne Hawkins, senior consultant; and 21What California Can Learn from Other States Dawn R. Gallagher, senior consultant. 22The Future of Health Information Exchange Acknowledgments 23 Appendices The authors wish to thank the individuals and A. Glossary of Terms groups who agreed to participate and be inter- viewed for this paper, including representatives B. Federal Funding Opportunities for California from the states profiled and California stakeholders C. Interviewees who provided valuable insights on the health data exchange environment in California. A complete 30 Endnotes list of participants is included as Appendix C. About the Foundation The California Health Care Foundation is dedi- cated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford. ABOUT THE SERIES This is the first in a series of reports sponsored by CHCF informs policymakers and industry leaders, CHCF aimed at helping inform California decision- invests in ideas and innovations, and connects makers about statewide data exchange. Other reports will focus on high-priority areas that require with changemakers to create a more responsive, significant improvement in data exchange and on the patient-centered health care system. existing electronic health record networks, regional health information organizations, and competing infrastructure that currently exist in California. California Health Care Foundation www.chcf.org 2 Executive Summary The COVID-19 pandemic has brought into stark relief Each state in this report may brand its system differ- the need for high-quality health data about every- ently, calling its statewide health data networks health one in the state. Creating and exchanging data more information exchanges (HIEs) or health information efficiently could allow health care payers, providers, networks (HINs), and may have followed a slightly dif- and public health agencies to accurately target high- ferent path to development over time, but all have priority populations in need of vaccinations, allow important features in common. The "framework for contact tracers to quickly reach patients with positive success" that these four states have forged offers les- test results, assist local governments and public health sons for California in how to institute new technology agencies in spotting early signs of outbreaks, and help and expand data exchange statewide. researchers learn which treatments are working. The Role of New Federal Even though millions of patient health records are shared electronically in California each day, health Regulations and Funding in data do not flow across large areas of California, and Data Sharing access is limited in the areas that do share patient In addition to expanding data sharing to better records. A highly fragmented system confines most respond to COVID-19 and other identified needs, new data exchange to regional, community-based health federal regulations that take effect as early as 2021 information organizations (HIOs) and private health will dramatically reshape the landscape and create an care networks.1 And many kinds of health care records opportunity for California to act. In 2020, the federal are likely left out, including those from behavioral government instituted new standards and require- health providers, social service organizations, and ments for expanding data sharing, such as requiring nursing homes, as well as those from out-of-state care hospitals to notify primary care providers when hos- providers.2 pitals admit, discharge, or transfer (ADT) patients; requiring health plans and payers (including Medicaid) Overcoming these shortcomings would reduce health to make patient data available; allowing patients to care disparities, improve patient safety and public access a single, complete health record from all their health, and reduce wasteful spending, poor coordina- providers and health plans; and allowing patients tion, and reactive care.3 and care teams to access a list of health plan provid- ers, and eventually, telling them which providers are This report explores what is working in four states accepting new patients.5 The goal of the federal regu- that have successfully implemented statewide health lations is to ensure that a greater amount of data flows data networks. The report broadly defines a state- through the delivery system and is broadly accessible wide health data network as a state's approach to data to improve patient and public health outcomes, while exchange that allows all health care providers, insti- maintaining strict privacy and security standards. tutions, and agencies across a state to appropriately access and securely share patient health information The cost to build or improve the technology to meet electronically. Further, the term is more expansively the federal mandates falls on the affected entities, defined in this report to address the direction in which such as the electronic health record (EHR) vendors, many statewide health data networks are moving, hospitals, or payers.6 However, there is significant fed- which is to also connect clinical and claims records, as eral funding, ranging from 50% to 100% of the cost, well as data about behavioral health care and social available to state Medicaid agencies for planning determinants of health (SDoH) to enable "whole-per- and implementing systems to be in compliance with son care."4 Medicaid regulations. There are two requirements to get the federal funding: (1) Funding is only available Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 3 for those costs of the project that benefit the Medicaid $ The lessons these states offer California as it con- population and (2) to be eligible for federal funds, siders a statewide health data network to meet accountability and oversight that show if the state- future needs. wide health data network is meeting the benchmarks and outcomes outlined in the grant documents must Interviews took place with leaders within each state- rest with a state entity like health and human services wide data network, as well as HIO, Medicaid, and (HHS) that includes the state's Medicaid agency.7 The delivery system leaders, to draw lessons on how COVID-19 relief funds also create another opportunity California can overcome challenges and innovate in to draw down federal funds to advance a statewide data exchange. health data network.8 Although these funds are tar- geted, they can be leveraged to develop a statewide health data network that addresses the data-sharing Four States with Robust Statewide needs of the safety net as well as public health emer- Health Data Networks gencies like COVID-19 response. Michigan, Maryland, Nebraska, and New York are nationally recognized as having robust statewide The four states covered in this report received fed- health data networks that ensure access to a nearly eral Medicaid funding for their statewide health complete record of a patient's health care data timely data networks because governance of the network and securely.9 includes state leadership and direction, which pro- vides coordination and direction that otherwise isn't Governance. State governments play a signifi- available today to the existing landscape of RHIOs cant leadership role in these networks. Maryland, and EHR-based private exchanges. The funding pro- Michigan, and New York each passed legislation that vides California with an opportunity to act boldly and assigned regulatory responsibility to a state agency expansively in creating a unified California health data like the state's human services agency and a board network. that sets policies and priorities for the health data net- work. Because Nebraska's health data network was Given the already huge investment in the exchange born before significant federal funding for the devel- of health data in California, the primary issue is how opment of these health data networks, Nebraska's California can build on existing efforts to best ensure network operates under a partnership agreement with that a patient's entire medical, behavioral, and social the state's human services department and has its own care team can access patient health data when and operating board that includes members of the state. where needed, safely and securely. This report Ultimately, each state has a multistakeholder board addresses that foundational issue by examining: with representatives from the public, nonprofit, and private sectors to guide policies and priorities. $ The governance and operating models and data frameworks that exist in four states - Michigan, Data model. While each state took a different Maryland, Nebraska, and New York - that approach to whether just one HIE or multiple net- have implemented robust statewide health data works send data to a central hub, and whether they networks. centrally store data or not, all the statewide health $ The ways in which each of these states expanded data models provide a minimum backbone that from simply sharing patient clinical data to address- includes a master patient index to accurately match ing high-priority needs, such as COVID-19 response records to the right patient for data that flow through and care coordination statewide, thus adding value their systems. Nationally, three basic models exist for to local and regional network systems. accessing, storing, and using data. They are referred to as (1) centralized, with centralized governance and California Health Care Foundation www.chcf.org 4 a data warehouse that stores and transmits data; (2) Nebraska has a state statute that mandates partici- decentralized, with network participants agreeing to pation. Nebraska's network also houses the state's support policies; and (3) hybrid, with a network-of-net- Prescription Drug Monitoring Program (PDMP) data- works system and a central hub that either uses a data base, which prescribers and dispensers are required to warehouse or acts as a data highway to exchange data check before certain types of opioid drugs can be pre- without storing it. Nebraska features a centralized data scribed or dispensed. The Nebraska database is unique warehouse with common standards. Maryland's hybrid because it includes all prescribed medications, not just network features a cloud-based data warehouse that opioid drugs, and provides a full medication history. stores all network data and places some policy-setting The requirement to check a PDMP greatly increases and governance at the individual network level. The participation in the larger health data network. Soon, hybrid networks of Michigan and New York feature all state Medicaid agencies will be required to have "data highways" that carry, but do not permanently an authorized PDMP registry that prescribers and store, all data. All the states report that the size of the dispensers of prescription drugs must check before population does not affect their network capacity. prescribing or dispensing certain opioid drugs. Participation incentives. Each state uses a mix of Coverage of high-priority needs. The health data encouraging voluntary participation along with regu- networks profiled in this report were initially built for latory rulemaking and statutory mandates to get providers to share patient data with other providers participation in HIOs or the health data network.10 In via their EHRs. The desire to improve health outcomes Maryland, payers are required to submit claims data at the patient and public health levels resulted in to an all-payer claims database (APCD), which is inte- these mature networks developing tools for specific grated with clinical records through the Chesapeake health needs, known as "use case" solutions, which Regional Information System for our Patients (CRISP). collectively have driven the expansion of health data Maryland requires all health plans, and other entities networks. These four networks incrementally imple- that aggregate and exchange data, to allow outside mented a few use case solutions that stakeholders providers access to their networks only if the hub agreed would require statewide data exchange, such network certifies that they meet certain standards to as: comply with state policies. Medicaid and managed $ Meeting federal requirements. Hospitals use health care organizations also participate in a shared savings data networks to send ADT notifications to primary plan distributed, in part, based on CRISP use. care providers when their patient gets admitted, discharged, or transferred to or from a hospital, In Michigan, participation is also voluntary, but all which will soon become a federal government payers including Medicaid contribute to a financial requirement for all hospitals. pool, redistributed only to MiHIN (Michigan Health Information Network) participants based on perfor- $ Responding to the COVID-19 pandemic. Due to mance milestones. their maturity and statewide coverage, the networks profiled in this report have greatly assisted states' New York's Department of Health has promulgated pandemic responses. COVID-19 test results flow to regulations that require certain providers with certified public health agencies and the statewide network, EHRs to exchange data with a qualified entity (QE) or which report COVID-19 data and lab results to pro- Statewide Health Information for New York (SHIN-NY). viders and patients. The networks also gather and New York has also maintained a Data Exchange map COVID-19 test results by zip code and gather Incentive Program (DEIP), managed by the New York other patient characteristics such as race, ethnicity, eHealth Collaborative (NYeC), that helps to offset pro- and income; assemble inventory levels for personal viders' costs of connecting to the network. protective equipment; and create real-time reports Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 5 about bed utilization from ADT feeds to assist with federal funds to support data exchange activities. patient transfers. Whether the network is centralized, decentralized, or hybrid is a secondary decision to which entity $ Helping systems talk with each other. Statewide governs its implementation. networks standardize and translate data coming into the system to ensure data going out follow $ A multistakeholder body with public, nonprofit, a format that all participants can view. The state- and private business representation provides wide networks use a master patient index to ensure operational oversight. In Maryland and Michigan, that the right patient is matched up with the right state statute defines the composition and role of records, even when the systems use slightly differ- the operational entity, including participation by ent spellings of a patient's name. the state authority. In New York, regulations define the framework and parameters of operational over- Scale. All of these networks have achieved signifi- sight; the regulation does not name an entity but cant scale that has not affected their capacity. New allows the state to select one. This public-private York boasts a statewide health data network that has structure enables states to work incrementally to more than enough capacity to cover the state's almost build trust and establish minimum standards for 20 million residents, proving that these types of net- data exchange while acknowledging the impor- works can work at scale in high-population states tance of a variety of perspectives including business like California. While significantly less populated, needs, public health, and patient privacy. Maryland, Nebraska, and Michigan operate statewide $ The network taps public and private funding. Each and provide health data networks for other states in statewide network profiled in this report leveraged their region, which helps with financial sustainability federal funding for planning and implementing its and creates economies of scale. Maryland's network health data network, and still requires that funding allows each type of participant or geographic jurisdic- to be sustainable. These states receive 50% to 80% tion to determine the data it will share. This mitigates of their financial resources from federal and state privacy and security concerns, and also the issues sources.13 To be eligible for federal funds, account- some health plans or hospital networks have had ability and direction for the statewide health data about their data being accessible by competitors.11 network must rest with a state entity like HHS that includes the state's Medicaid agency. The availability of COVID-19 relief funds (through the Coronavirus A Framework for Success Relief Fund) provides another opportunity to draw The experience of these four states offers initial insights down federal funds to advance a statewide health for policymakers to consider as they work to imple- data exchange. Local or regional HIOs and large ment a statewide health data network in California. hospital networks generally cannot tap direct fed- The insights provide a framework with three features: eral funding and must seek other ways to recover $ The state takes a strong leadership role. Maryland or absorb the costs. and New York used statute to grant formal authority to state entity while Michigan used statute to create a commission that works with a state entity to estab- lish the statewide health data network.12 The state entity plays a significant role in setting data-use pri- orities, using the agency's authority to encourage or mandate network participation, and drawing down California Health Care Foundation www.chcf.org 6 What California Can Learn from The Future of a Statewide Health Other States Data Network in California Despite California's large size and its wide variety of While new federal requirements are expected to approaches to health data exchange, the leaders of greatly expand health data networks nationwide, other states who were interviewed for this report did the leaders interviewed believe that states will play a not see those issues as insurmountable. The interview- major role, in part because states will be able to lever- ees saw the question as not if California will act, but age federal funds to meet the requirements. Twelve rather how the state will create a health data network years ago, California embarked on an effort that did that benefits all Californians. not come to fruition, partly because the state and a range of stakeholders were not ready to coalesce Based on lessons learned from implementing other around a vision for what a health data network could statewide networks, interviewees offered both high- and should be. level and tactical suggestions for California to consider: A great deal has changed since then in technologies, $ Establish a statutory leadership role for state gov- federal requirements and funding, and urgent public ernment. Keep the statute to top-tier policy issues health needs. In California, a consensus is emerging to such as governance, participation by providers and once again consider whether and how to implement payers, consumer access to the data, data privacy, a statewide health data network. Practical lessons and financing. The statute should describe the state learned from robust statewide efforts in the four states role and the role of private and public partners in profiled can offer decisionmakers important insights administration and operation of the network. about how to achieve the benefits that widescale $ Buildin a mechanism for broad stakeholder partici- access to health data offers to all Californians. pation, oversight, and accountability. $ Recognize that use cases must drive the expan- sion of health information exchange over time. Incrementally implement solutions, starting with a problem most people believe should be addressed. Move from planning to action by identifying a uni- fied agenda and priorities among private and public entities and working to apply that agenda to the execution of a state framework. $ Provide incentives for participation in the networks and use enforcement "sticks" for entities that do not fully participate. Consider participating in or organizing payer pools, and charging fees for par- ticipation and value-added services to promote greater participation and sustainability. $ Take full advantage of federal funding, including funds from the Health Information Technology for Economic and Clinical Health (HITECH) Act,14 the Coronavirus Aid, Relief, and Economic Security (CARES) Act,15 and the Coronavirus Relief Fund (CRF),16 for investment in data exchange capabili- ties and infrastructure. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 7 Introduction T his report is the first in a series sponsored by the agencies, patients, and providers, including emer- California Health Care Foundation (CHCF) to gency responders. help inform decisionmakers in California about why better health data exchange is important, what The electronic exchange of health data helps facili- efforts and infrastructure for the sharing of health data tate coordinated patient care, reduce duplicative currently exist in California, and what models for state- treatments and services, and avoid costly mistakes.18 wide health data networks exist nationally and could Health data from doctor visits and test results get be viable in the state. updated each time a patient visits a health provider. Using health data networks, a provider can receive a The report examines statewide health data networks list of patients with heart disease, for example, which in Michigan, Maryland, Nebraska, and New York. they can use to locate patients who need immediate Each of these networks is nationally known to have care and schedule follow-up appointments. achieved robust statewide electronic access, timely and securely, to a patient's health data when and Recent federal rules will require payers to build and where needed. maintain systems that allow patients easy access to their data to better control decisions about their Statewide health data networks allow all health care health, which can be easier when all their records are providers, institutions, and agencies across a state to accessible through a single portal.19 appropriately access and securely share patient health information electronically. The term is defined more The exchange of health data is vital for patient and expansively in this report to include networks that con- public health. Given California's huge investment in nect clinical and claims records as well as data about the adoption of health information technology (HIT), behavioral health care, social determinants of health spurred on by significant federal funds, the state must (SDoH), "whole-person care," and other forms of ensure that data captured in HIT systems are made health-related information. available at the right level, at the right time, to the right people. The data in these networks generally originate in a patient's electronic health record (EHR), which The possibility of implementing a statewide health records demographic and clinical patient data such data network in California has recently grown closer as blood pressure, health conditions, treatments, to reality. As California decisionmakers explore their and more recently, immunizations, vaccinations, or options, it is vital that they consider a framework for information about SDoH like homelessness or food success that other states have forged as they imple- insecurity. Larger hospital systems or health plans typi- mented their own statewide networks. cally have their own private local and regional health data networks in which health care professionals, care This report examines: managers, and billing units store and access patient $ Thegovernance and operating models and data records, although they do not connect with every pro- frameworks that exist in four states - Michigan, vider, institution, and agency like a statewide health Maryland, Nebraska, and New York - that have data network can.17 Providers with EHRs connected implemented robust statewide health data net- to these networks generally have more patient health works. (See "Three Data Models" on page 9.) data available to them, which can be critical during public health emergencies such as the COVID-19 pan- $ Theframework for success that each of these states demic. Information flowing to and from a statewide has used to add value to local and regional systems health data network can be available to public health and to expand data exchange from simply sharing California Health Care Foundation www.chcf.org 8 Three Data Models The technology model that a health data network chooses fundamentally shapes how it collects, organizes, and exchanges its data, and therefore which use cases it can offer its members. Three basic models for statewide health data networks have emerged over the years, with centralized and decentralized approaches on either end of a spectrum, and a hybrid "network- of-networks" approach at the center. Centralized Model. Operates like a "hub and spoke" whereby data are aggregated and managed centrally. The health data network is responsible for operating the centralized technology and making information available to participants for purposes agreed to by those participants. ADVANTAGES CHALLENGES $ Uses one consistent privacy consent approach $ Difficult to normalize and standardize data $ Less expensive for a central repository to operate $ More difficult to scale a data warehouse than for multiple organizations $ Requires greater trust among participants to maintain their own data $ Rich set of aggregated and consolidated patient data, enabling more analytical use cases Hybrid Model. Individual networks or groups of networks send data to a central hub, where data are shared with users. The hub can store the data in a data warehouse or can act as a "data highway" that carries information without storing it. At a minimum, its technology centralizes some patient data and functionalities, like identities and record locator services. ADVANTAGES CHALLENGE $ May be more scalable than the centralized model $ More costly overall to sustain multiple platforms because reducing the number of sources of data that perform the same function, like data reduces the amount of data normalization and normalization standardization needed $ Allows participants to leverage existing investments in data-sharing technologies, allowing for more buy-in earlier Decentralized Model. An organization generally acts as a facilitator that convenes participant networks to set policies and regulations and creates mechanisms for participants to connect to each other and to share patient health records. Members primarily consist of regional health data networks, state agencies, and provider health systems. California essentially has this model today, with the California Trusted Exchange Network facilitating agreed-upon standards for data sharing across its members. The decentralized model is rarely found in other states, and no statewide decentralized model exists. ADVANTAGES CHALLENGES $ Minimizes privacy issues, because data are housed $ Can be more expensive to exchange information in each individually secured health data network across networks because no standard mechanism for exchange exists $ Takes advantage of existing network infrastructure investments $ Offers a less formal governance mechanism without real accountability $ No assurance of statewide coverage Source: "What Are the Different Types of Health Information Exchange?," healthit.gov, last reviewed January 8, 2019. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 9 patient clinical data to implementing solutions networks ended in 2014, some exchanges went out addressing high-priority needs, or "use cases," of business while others consolidated. Since 2011, the such as COVID-19 response and care coordination. number of HIEs has fallen by almost half.22 Federal funding is still available at reduced levels and is $ The state's current delivery system, regulatory generally only available through a Medicaid agency environment, technology infrastructure, and invest- requesting funding for very specific projects that meet ments made in health information exchange. US Centers for Medicare & Medicaid Services (CMS) $ The lessons learned that these states offer to requirements as described later in this report. California as decisionmakers consider implement- ing a statewide health data network, specifically one that acknowledges the state's current deliv- ery system, regulatory environment, technology New Federal Rules infrastructure, and investments made in health information exchange. Create an Opportunity for California to Act New federal regulations that go into effect as early as A Brief History of Health 2021 will dramatically reshape the landscape. In 2020, the federal government instituted new standards and Data Networks rules for EHRs, hospitals, and health care providers. These rules impose mandates on payers, including all In 2009, the Office of the National Coordinator for health plans and state Medicaid programs. Health Information Technology (ONC) started a five- year program that provided hundreds of millions of The goal of the regulations is to ensure that a greater dollars in 100% federal funding for states to build amount of data flow through the delivery system and what the ONC termed health information exchanges is broadly accessible, to improve patient and public (HIEs).20 The ONC encouraged states to establish an health outcomes while maintaining strict privacy and Office of the State Coordinator to oversee the state's security standards. The following summarizes high- health information technology efforts. States could level key requirements for stakeholders:23 either operate their own HIEs or partner with nonprofit or for-profit organizations to build and operate HIEs. EHR vendors: Nearly every state partnered with a nonprofit entity to operate the HIE. States were also encouraged to $ Interoperability. To be certified, all EHR vendors name a state designated entity (SDE), in most cases must have compatible systems, together known as also the HIE, to oversee and establish appropriate pri- "interoperability." vacy and security safeguards and other policies and standards. The four statewide data health networks Payers (including all Medicare and Medicaid program entities): covered in this paper are SDEs.21 $ Patient access APIs. Entities are required to have an electronic system that allows patients to eas- The federal government predicted that once it had ily access their health and claims records using an infused substantial funding into fortifying and con- electronic device of their choosing. necting EHRs and HIEs, the networks would become sustainable without significant additional federal $ Provider directory APIs. Entities are required to funding. But to get providers to connect to networks have an electronic system for patients and care- early on, many networks did not charge fees, and if givers to access a master index of providers under they did, the fees were not enough to cover operat- contract or agreement, and eventually, to identify ing expenses. When federal funding for health data providers accepting new patients. California Health Care Foundation www.chcf.org 10 $ Portabilityof patient records. When patients leaders from the four states interviewed for this report move from one payer to another, the previous stressed that California should take this opportunity payer(s) must provide health records and claims to assess how a statewide health data network could to the new payer upon request. Eventually, a meet the Medicaid mandates in a cost-effective way complete health and claims record is established. while also providing opportunities to indirectly reduce the costs for hospitals, providers, private payers, and Providers: health plans. (See Appendix B for more details on federal funding opportunities for Medicaid-related $ Information blocking. Providers, health plans, and projects.) payers are prohibited from blocking patient health information from being shared with other health care providers and payers. $ Prescription Drug Monitoring Program (PDMP). Four States with Robust Under the 2018 federal Substance Use Disorder Prevention that Promotes Opioid Recovery and Statewide Health Data Treatment for Patients and Communities (SUPPORT) Networks Act, state Medicaid agencies must have an autho- This section examines Michigan, Maryland, Nebraska, rized PDMP registry, and prescribers and dispensers and New York - four states nationally recognized as of prescription drugs must check the PDMP before having robust statewide health data networks, known prescribing or dispensing certain opioid drugs. in these states as health information exchanges (HIEs). $ Admit, discharge, or transfer (ADT). All hospitals Each ensures access to a nearly complete record of a must send an electronic notification to a patient's patient's health care data in a timely and secure way.26 primary care provider or care team when a patient Table 1 summarizes characteristics of the four state- gets admitted, discharged, or transferred to and wide networks examined in this report (see page 12).27 from a hospital. Each of the entities that fall under the rules must pay Michigan for the tools and systems that perform the mandated The Michigan Health Information Network (MiHIN) is functions. However, federal funding ranging from 50% a hybrid statewide health data network.28 Its central to 100% of the cost is available to Medicaid agencies hub moves data and stores data for a limited period for the portion of the costs of planning and imple- of time. When MiHIN began, Michigan had a frag- menting tools and systems that benefit the Medicaid mented system of networks similar to what California population.24 Agencies can access federal funds only if has now. Over the years, the networks consolidated a state Medicaid entity retains accountability and direc- and MiHIN's hub became the vehicle for exchange. tion over the systems. The four statewide health data networks covered in this report can get the Medicaid Originating Authority and Oversight federal funding because their state's Medicaid agency In 2006 Michigan law established the Health maintains accountability and direction over the HIE Information Technology Commission (HITC) which, contracts to build the necessary tools and systems.25 with Michigan Department of Health and Human Services (MDHHS) participation, created MiHIN, a net- While direct federal funding for mandates imposed work-of-networks collaborative. The HITC designed on EHR vendors, hospitals, and private plans and pay- MiHIN to be a 501(c)(3) entity that contracted with the ers is not available through a state Medicaid agency, state for services the state required, including state- given that federal funds are available to Medi-Cal for wide data exchange, and could provide additional Medicaid projects that meet federal requirements, services to other participants and customers. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 11 Table 1. Characteristics of Four Statewide Health Data Networks, continued MICHIGAN MARYLAND NEBRASKA NEW YORK (MIHIN) (CRISP) (CYNCHEALTH) (SHIN-NY) Originating Statute established an HIT Statute directed an exist- Market driven. CyncHealth Statute established Authority Commission, which, with ing independent state was originally formed by a directive to the for the the participation of the agency (Maryland Health payers. With availability of Department of Health Creation Michigan Dept. of Health Care Commission [MHCC]) HITECH funds for develop- (DOH) to establish a of the and Human Services to issue an RFP and estab- ing HIEs, DHHS partnered statewide network and set Health Data (DHHS), established the lish a health data network with CyncHealth through requirements in regulation Network independent HIE. across HIOs. contracts and agreements for operating a quali- to expand use cases and fied entity (the regional the network. CyncHealth HIOs) and the statewide operates as a private governance and technical nonprofit 501(c)(3). operations. Entity with DHHS collaborates with Maryland Health Care No formal state regulatory DOH has regulatory Formal MiHIN and manages any Commission has regulatory authority over CyncHealth, authority over SHIN-NY. Regulatory grant or contract work it authority. but DHHS promulgated Authority elects to award MiHIN. rules that require provider over the participation for some Network operations in CyncHealth. State- Statute created the Health Same board for the None. Statewide policies The DOH relies upon Established Information Technology Maryland Health Care and priorities developed the New York eHealth Oversight Commission and identi- Commission. in collaboration between Collaborative (NYeC), a Board fied 13 public and private CyncHealth and DHHS. 501(c)(3) to assist with members that advise on governance of the network policy and priorities for and contracting with the MiHIN. MiHIN routinely QEs for services. presents at this forum. Day-to-Day MiHIN has its own operat- CRISP has its own operat- CyncHealth has its own QEs have independent Operational ing board for operational ing board for operational operating board for opera- operating boards. NYeC Governance decisions. decisions. tional decisions, which serves as the operational includes DHHS members. board for SHIN-NY, and MiHIN also created the CRISP also has a board of there are numerous MiHIN Operations and advisors and five advisory CyncHealth also has committees that support Advisory Committee committees to provide several advisory commit- that work. to advise on use case guidance and input. tees to provide guidance. development. Levers to Medicaid requires health MHCC requires APCD Statute requires opioid Regulation requires certain Encourage plans to incent providers submissions linked to prescribers and dispensers providers with certified Participation to participate in statewide CRISP clinical data. to check the PDMP* run by EHRs to exchange with a use cases (versus partici- CyncHealth. QE/SHIN-NY. Health Services Cost pate in HIOs). In response, Review Commission The Data Exchange Medicaid and commercial requires data submission Incentive Program, health plans have created to CRISP to measure managed by the NYeC, a pool of funds for organi- hospital-specific helps to offset providers' zations to participate performance. costs of connecting to and conform their data the network. to specific high-value use Medicaid and managed cases advanced by MiHIN. care organizations partici- pate in a shared savings plan distributed, in part, based on CRISP use. Privacy and HITRUST certified† HITRUST certified† HITRUST certified† HITRUST certified,† Security state audits Scope Statewide (plus additional Statewide Statewide Statewide services outside the state) (plus WV, DC, and soon CT) (will soon add IA) California Health Care Foundation www.chcf.org 12 Table 1. Characteristics of Four Statewide Health Data Networks, continued MICHIGAN MARYLAND NEBRASKA NEW YORK (MIHIN) (CRISP) (CYNCHEALTH) (SHIN-NY) Data Model Hybrid network with Hybrid network with Centralized policies, Hybrid network with central hub that carries central hub that carries standards, and data central hub "highway" and stores data for a and stores data. warehouse. that carries but does not limited time, 100 days to store data. 18 months, with an option to aggregate data for use cases that require longitu- dinal records or analyses.. Largest Federal, state, payers, and Federal, state, payers, and Federal, state, payers, and Federal, state, payers, and Funding hospitals (user fees) providers (user fees) grant funding providers (user fees) Sources Core Use Over 37 use cases: ADTs, ADT notifications, PDMP, DMP, quality reporting and Patient record lookup, Cases immunization, SDoH, lab reporting analytics results delivery, master Added patient provider attribu- patient index, ADT tion, master patient index, notifications, quality labs, and quality tools measurement, etc. Use Cases Receives lab tests and Enables statewide tracking Connects test centers to Sends public health lab Added for vaccination information and surveillance, notifica- public health, sends test results to providers, offers COVID-19 and sends to providers tions to providers. results to providers, offers demographic data for Response ADTs and demographic demographic data for public health tracking. links to identify, track and public health tracking. provide timely services. *A Prescription Drug Monitoring Program (PDMP) is an electronic database that prescribers and dispensers must check (beginning in 2021, under a 2019 federal law) before certain types of opioid drugs can be prescribed or dispensed. † A national independent certification that demonstrates compliance with HIPAA (Health Insurance Portability and Accountability Act) and privacy standards. From its inception, the vision was to coordinate data Data Model across the many local and regional HIOs in the state MiHIN functions like a "highway" that carries data and add value to these networks by providing services between systems and does not permanently retain that enabled and enhanced exchange at a statewide patient records in a data warehouse. Rather, data are level. MiHIN was born out of HITC to deliver on that held for 100 days to 18 months, with optional data vision. The HITC is led by a 13-member public- and aggregation use case for longitudinal record and ana- private-sector board that sets MiHIN's policies and pri- lytics. MiHIN also facilitates specific use cases, such orities. MiHIN's day-to-day operations are governed as matching patients with records, as well as sending by an 18-member MiHIN board, which consists of alerts to primary care providers when their patients state officials and a representative from each of the visit the emergency department. individual system/network participants. MiHIN also has an operations advisory committee (MOAC) that Participation Incentives handles use case development and support and man- While participation in MiHIN is voluntary, MDHHS agement of technical working committees. It consists requires Medicaid plans to incentivize providers to of subject matter experts. participate in the local HIOs. To this end, Michigan hospitals and payers (including Medicaid) pay into a pool based on the number of patients they serve. The pool pays providers who use the network a financial Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 13 share based on the quality of the data the provider public health agency, which in turn sends the data submits through HIOs that connect to MiHIN and the to MiHIN. The network sends test results to provid- provider's use of these systems. ers that have an active relationship with a patient. MiHIN's master patient index algorithm has been Industry collaboratives like the Michigan Collaborative invaluable in the state's ability to identify, track, and Quality Initiatives (CQIs) reinforce many of the state- provide services to COVID-19 patients timely and wide objectives and services that MiHIN supports. effectively. For example, Blue Cross Blue Shield of Michigan $ Helping systems talk with each other. MiHIN does (Blue Cross) provides incentives for participating HIOs not permanently store data, but it can accept and connected to MiHIN through its CQIs. The initiatives standardize information from providers working involve partnerships among Blue Cross hospitals, in disparate data formats and IT systems so the physicians, and other stakeholders to address clini- information becomes useful. For example, the cal program areas with high costs and varying quality health data networks created by local MCOs and outcomes. health systems have unique methods of identifying patients, and differences between them prevent Coverage of High-Priority Needs these networks from matching patients and their MiHIN's unique success stems from what it calls its clinical information across systems. MiHIN over- "use case factory," an effort to identify and develop comes this by providing a master patient index. solutions targeted to specific health needs. The MiHIN advisory committee and technical teams work The Future of Data Exchange in Michigan with Michigan's nonprofit and for-profit business lead- MiHIN is a mature network and will focus over the next ers who recommend and prioritize the development several years on how it can add even more value for of new use cases based on the challenges and oppor- Michigan health care participants. It plans specifically tunities they face. To date, MiHIN's use case factory to work toward the following goals: boasts over 37 use cases developed to meet those specific challenges and opportunities that benefit pro- $ Expand participation among community health viders, payers, and patients. Each new solutions drives organizations, social services agencies, correctional increased traffic and use of the network. MiHIN pro- institutions, and auto insurers. vides access to a core set of use case solutions with $ Implement use cases that "follow the thread" of the basic participation fee, with enhanced services information flowing through the emergency depart- and use cases for participants who agree to pay for ment. For example, EMS responders will receive extra services. details about a person they interact with, such as a person's health conditions and medications, before The service offers solutions tailored to the following they arrive on-site. needs: $ Develop use cases that eliminate the duplication $ Meeting federal requirements. Federal law will of efforts among Michigan's DHHS, public health soon require all hospitals to send ADT notifications agencies, department of education, hospitals, to all providers primarily responsible for a patient's and specialty care providers. In some cases, pub- care. MiHIN has already met that requirement for lic health requires providers to submit redundant its participants - providers receive daily ADT and documentation such as demographic information emergency room notifications for more than 70% of that is also submitted to DHHS. MiHIN is working the state's 10 million residents. to develop tools that auto-populate data across $ Responding to the COVID-19 pandemic. When systems. COVID-19 tests are performed via drive-through, the local test center sends the data to the California Health Care Foundation www.chcf.org 14 Maryland The Health Services Cost Review Commission, an The Chesapeake Regional Information System for independent state agency that has regulated hos- our Patients (CRISP) is a hybrid statewide health data pital rates since 1971, requires hospitals to connect network for Maryland.29 CRISP has expanded its geo- to CRISP to enable measurement of hospital perfor- graphic footprint by becoming the statewide health mance on readmissions. This requirement has resulted data network for Washington, DC; West Virginia; and in hospitals, public health departments, and ambu- soon Connecticut. latory providers having access to CRISP Reporting Services (CRS), a set of monthly reports that analyze Originating Authority and Oversight hospital trends and utilization by linking hospital case A statute designated an existing independent regu- mix data with unique patient identifiers. The quality latory agency, the Maryland Health Care Commission reports are used to determine payments from the (MHCC), to issue a request for proposals (RFP) to shared savings program. establish a statewide health data network that would coordinate data exchange across the state's exist- The MHCC requires all health care payers to submit ing data-sharing systems. The governor appoints 15 claims data to Maryland's all-payer claims database commissioners to govern MHCC, with the advice and (APCD), including demographic and health care consent of the Maryland Senate. The MHCC has a codes that identify the services and time billed for policy board that has oversight over and advises on each claim. The claims data are integrated with clinical statewide health data network activities. health records through CRISP, providing both clinical information on the health care services provided and CRISP was established as the state designated administrative information on the amount paid for the entity (SDE) under state law in response to the RFP. service. This integration provides greater insight into, CRISP has its own operational board of directors that for example, hospitals or regions in which inpatient includes senior health care executives and a board of care or hospital readmissions happen more frequently advisors that provides guidance and input, along with and supports analysis by the Medicaid agency of which five operating committees. members tend to go the emergency room more often. Data Model Coverage of High-Priority Needs CRISP is based on the hybrid model and centrally CRISP has taken an incremental approach to introduc- stores data from the participating networks. CRISP ing use cases over time. The top needs addressed benefits from being cloud-based, allowing users to include: store and access data on internet servers without the $ Helping meet federal requirements for ADT feeds. need to build data repositories or warehouses on CRISP allows hospitals to submit ADTs through local IT systems. Cloud-based software makes scal- CRISP, meeting this new federal requirement. A ing and updating the systems easier. Unlike traditional private company markets the alerts, bringing in hardware and software, cloud computing helps orga- additional revenues for the network. nizations stay at the forefront of technology without having to make large investments in purchasing, oper- $ Meeting PDMP requirements. CRISP is fully inte- ating, and maintaining equipment themselves. grated with the state's PDMP, which prescribers and dispensers are required to check before they Participation Incentives issue opioid drugs. This allows the state to track Decisions of two independent commissions in controlled substance prescriptions and can provide Maryland play a critical role in driving participation in health authorities timely information about pre- CRISP. scribing and patient behaviors that contribute to the opioid epidemic. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 15 $ Responding to the COVID-19 pandemic. COVID- Nebraska 19 test results are reported by providers and labs CyncHealth is a centralized statewide health data net- into CRISP, which runs reports by zip code and work operating in Nebraska.30 sends the results to public health agencies. CRISP also receives reports from hospitals about inventory Originating Authority and Oversight levels for personal protective equipment; these CyncHealth, formerly known as the Nebraska Health reports, too, are forwarded to public health agen- Information Initiative, launched in 2008 indepen- cies. CRISP's master patient index, which matches dent of the state as a nonprofit, payer-funded entity patient records throughout the system, uses posi- focused on providing health data network services for tive COVID-19 results to report on disparities a fee. Its relationship with the state has significantly among groups, races, ethnicities, and income lev- evolved, becoming a public-private partnership that els. This type of analysis allows the state to focus has formal agreements with the state. on high-priority groups and geographies, and to understand how to use data about disparities in CyncHealth has a 16-member board with representa- care to better inform the public health response in tion from government, hospitals, payers, associations, high-priority areas. and consumers. The network has an executive com- $ Matching patients and records. CRISP manages mittee, a finance committee, a consumer advisory a master patient index that helps coordinate the council, a professional association advisory coun- sharing of data across its many data sources for cil, a technical committee, and other committees as all its use cases. It helps link claims data from the needed. CyncHealth has a governance agreement APCD to the clinical data already flowing through with the large department that houses Medicaid and the system. It also supplies demographic data to public health, for data that originates from Medicaid better understand disparities among groups, races, claims, contact tracing, syndrome surveillance, social ethnicities, and income levels. CRISP also creates determinants of health, and public health registries. It a patient-specific identification number when a became the designated state entity in 2009. No legis- patient leaves one hospital and later is admitted lation was enacted in creating, forming, or managing to another hospital. CRISP uses the information to CyncHealth. Rather, collaboration with the state has identify recurring visits. forged a business partnership. The Future of Data Exchange in Maryland Data Model CRISP envisions further consolidation of health data CyncHealth has a central data warehouse that allows networks across the country as some systems mature data to flow among various systems. Although it and offer more valuable services. To successfully uses centralized policies to govern the data network, accomplish this, statewide data networks like CRISP it does not mandate that participants use a specific will move to standardize technology systems, data data-sharing technology. Instead, it hosts and stan- tools like master patient indexes, and important use dardizes the data so that all participants can access cases, especially for issues that require coordination at and view the data across systems. scale such as COVID-19 response. Participation Incentives Nebraska enacted a statute that requires all pre- scribers and dispensers to check the PDMP before prescribing medications, and CyncHealth is fully integrated with the PDMP database. While regularly accessing the PDMP, providers become aware of the additional patient information in the health data California Health Care Foundation www.chcf.org 16 network and begin to access the system for a broad long as the patient used a major national pharmacy. range of purposes. In 2019 the state established a PDMP state com- mittee that provides oversight of the PDMP and its Coverage of High-Priority Needs activities with CyncHealth. Figure 1 explains how Although use of the CyncHealth data network to share data flow in the PDMP. patient records is voluntary, the network has devel- oped solutions that enable its users to fulfill mandatory $ Reducing administrative burden. By virtue of being requirements. a health data network with broad participation, CyncHealth enables organizations to connect once $ Meeting PDMP requirements. Nebraska launched to CyncHealth and reduce the number of systems a PDMP in 2017 that is fully integrated with they would otherwise need to integrate with, such CyncHealth. It lets providers query prescriptions as public health agencies to satisfy public health dispensed from pharmacies and other dispensa- reporting requirements or to payers for quality ries. The Nebraska PDMP is unique in that it holds improvement programs. all prescribed medications, not just opioid drugs, which gives prescribers and dispensers the ability to $ Avoiding duplication of health services. By provid- view a patient's full medication history. The PDMP ing a complete patient record, CyncHealth is able holds prescription information for all residents with to help providers and patients avoid unnecessary a Nebraska zip code, even if the patient traveled tests or procedures otherwise caused by missing and fulfilled a prescription outside of the state, so patient records. Figure 1. Nebraska Prescription Drug Monitoring Program Source: "Nebraska Prescription Drug Monitoring Program," CyncHealth, n.d. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 17 $ Addressing social determinants of health. data exchange infrastructure, rural patient data, for CyncHealth matches patients with data from example, sits isolated in systems that do not com- the Supplemental Nutrition Assistance Program, municate. CyncHealth intends to work to ensure that Temporary Assistance for Needy Families, Child patient data are portable by networking the entire and Family Services, and other human service agen- state ecosystem (including Nebraska's Medicaid cies. It provides these agencies demographic data agency, payers, hospitals, clinics, and skilled nursing that assist with care coordination. CyncHealth has facilities) and expanding beyond state boundaries. a platform that enables social care organizations to send and receive electronic referrals, helping them address people's social needs and improve health New York care outcomes across communities. CyncHealth is The Statewide Health Information Network for New expanding its SDoH platform to several additional York (SHIN-NY) is a statewide hybrid health data net- states: Iowa, Kansas, Minnesota, North Dakota, and work with a central hub that acts as a data highway South Dakota. without storing data.31 $ Responding to the COVID-19 pandemic. Originating Authority and Oversight CyncHealth is the conduit for receiving ADT infor- New York has a long history of supporting health infor- mation, lab results, and COVID-19 surveillance data mation exchange. The early days supported regional from inpatient and ambulatory settings. CyncHealth health information exchange using federal grants has connected facilities (at no cost) to help them to approximately 12 regional exchanges. In 2010, a report COVID-19 data to public health agencies. statute directed the Department of Health (DOH) to It has also created dashboards to provide COVID- promulgate regulations that would provide for the cre- 19 data to clinicians and state agencies, as well as ation of SHIN-NY to coordinate data sharing across a real-time report about bed utilization based on the qualified entities (QEs), establish the overarching ADT feeds to assist with patient transfers. governance and rules of the road, and provide for a central hub to support these activities. The DOH The Future of Data Exchange in Nebraska relies on the New York eHealth Collaborative (NYeC, CyncHealth holds fast to its mission, providing bet- pronounced "nice") to lead the advancement of ter care and improved outcomes. The organization SHIN-NY. The system allows participating health care credits its success to not simply focusing on technol- professionals, with patient consent, to quickly access ogy and regulations, but to building relationships, to electronic health information and securely exchange ensuring the connections it provides are handled cor- data statewide. Similar to the other networks exam- rectly, and to delivering data that are actionable in a ined for this report, the system benefits from a high clinical context. degree of support from state health agencies and the governor's office. CyncHealth also believes that its PDMP is a model for many states, particularly its inclusion of all prescription The QEs are certified by the DOH, and NYeC contracts drugs. Over time, the organization hopes to provide with QEs for the core statewide services and sets their additional value for participants and patients by lever- performance standards. The QEs receive data from aging the combination drug and clinical information 100% of hospitals in the region. Approximately 80% of for better outcomes and lower costs. ambulatory and behavioral health providers are con- nected to SHIN-NY, with more than 60% contributing In addition, CyncHealth believes that regions within data.32 and across states need to forge partnerships. Patients in rural areas go to cities for care. Without statewide California Health Care Foundation www.chcf.org 18 Data Model The Future of Data Exchange in New York SHIN-NY is a network-of-networks system that con- In the future, New York will focus on efforts to access nects regional networks known as qualified entities behavioral health and social determinants of health (QEs). At its core, it provides a master patient index data, which traditional systems generally do not and helps identify the availability of patient records include but which are critical to whole-person health. across all QEs. Each QE has its own platform and ven- dor, and enrolls participants within its region, including hospitals, clinics, home health care agencies, payers, and ambulatory practices. Participants can access and A Framework for Success exchange electronic health information with others in Research conducted for this report suggests three their region. When a user of one QE queries the sys- features are critical to implementing statewide health tem, a message is sent to the SHIN-NY hub to see data networks successfully. Together they offer a if that patient has records in any other QEs, in which framework that can help policymakers navigate the case it sends the data to the requester. For use cases most important issues as they consider implementing such as ADT alerts, the SHIN-NY hub points to which a statewide health data network in California. other QEs should be notified. Health care data reside in the QEs, not in SHIN-NY. In The State Takes a Strong that respect, SHIN-NY can be thought of as delivering Leadership Role mail but not opening it. It notifies a QE that it has mail Experts generally agree that successful states estab- to open in the form of a query. Even so, through col- lished strong leadership to set policies and priorities, laboration with NYeC and the QEs, SHIN-NY is able to use rulemaking authority to encourage participation, provide statewide data for strategic state initiatives. and access federal funding to advance the statewide health data network. Strong state leadership means Participation Incentives that a high-level official within the state government New York's regulatory framework requires that certain is appointed to oversee the exchange efforts. Each providers with certified EHRs connect and exchange of the four states profiled in this report has a director data with QEs and SHIN-NY. Additionally, the state of an Office of Health Information Exchange, operat- has maintained a Data Exchange Incentive Program ing at a high level within a state agency such as the (DEIP), managed by NYeC, that helps to offset provid- Department of Health and Human Services, with rule- ers' costs of connecting to the network. making and enforcement authority over the program. Coverage of High-Priority Needs Core use cases, such as health records, ADTs, results A Multistakeholder Board Provides delivery, and other alerts, are provided to all users. Transparency and Accountability Value-added services that users pay for include alerts All the successful states profiled in this report created that contain additional customized information, a multistakeholder board to provide oversight, help analytics used for predictive modeling, data about set priorities, and craft policies for the statewide health medications sold but not picked up, and more. data network. These boards have representatives from the public, nonprofit, and private sectors, and partici- SHIN-NY has assisted with the COVID-19 response pation from the state. Many of the statewide health by partnering with the state to manage lab results data networks also have a complementary set of and send alerts to providers for patients who have committees that advise on technology and implemen- positive results. SHIN-NY also sends data extracts to tation. These diverse groups worked incrementally to public health agencies to help track patients who were build trust across organizations with different perspec- admitted to or transferred to and from hospitals. tives and establish minimum standards for exchange. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 19 They started by taking small steps, which eventually became big steps, and focused on execution and How Health Data Networks Can Help delivering as promised. Fight COVID-19 An effective COVID-19 response requires mature statewide data exchange. To accomplish this, the The Networks Tap Public and state needs to ensure (and mandate if necessary) that some data flow through health data networks Private Funding to and from public health systems, and that public Each of the statewide health data networks pro- health systems and organizations have the infra- filed in this report relied heavily on federal funding, structure and upgraded capabilities necessary to and they still require public funding at the federal participate. and state level to be sustainable. In general, these A statewide health data network can provide states receive 50% to 80% of their funding from mechanisms that allow public health agencies and federal and state sources. These networks are providers to exchange COVID-19 testing, tracing, often designed with authority and accountability and vaccine efforts. Examples of how the four states used their statewide network for successful resting within the state Medicaid agency, which gen- COVID-19 response include: erally falls under the state's Department of Health and $ Partnering with the state to manage lab results Human Services so that they are eligible to receive and send alerts to providers for patients who CMS federal funding. The availability of COVID-19 have received positive results, as well as sending relief funds presents another opportunity to access data extracts to public health agencies to help federal funds to advance a statewide health data net- track patients who were admitted, discharged, work. As discussed earlier in this paper, networks built or transferred to and from hospitals. by MCOs or large hospital systems generally cannot $ Identifying, tracing, and tracking COVID-19 tap either direct CMS federal funding or most of the vaccinations in a statewide network that does CRF funding, and must instead seek other ways to not routinely store data, which avoids health plan concerns that they do not have complete control recover or absorb the costs. (See Appendix B for a over their data, to realize the better public good. detailed discussion on leveraging federal funding for $ Feeding COVID-19 test results into the statewide statewide health data networks.) network, which then can run reports by zip code and feed the results to public health agencies for Many states, including the four states profiled in tracing and tracking. this paper, impose participation fees and charge for $ Making inventory reports available that show robust services such as data analytics. Some states levels of personal protective equipment. seek outside grants for specific projects, such as care $ Usinga network's master patient index report management, to provide additional funding, and oth- about positive COVID-19 results to uncover ers establish provider or payer incentive pools to drive disparities among groups, races, ethnicities, up utilization and revenues. Requiring providers to and income levels. participate and offering financial incentives promotes $ Usingthe network's demographic capabilities to financial sustainability and yields higher engagement meet the new Coronavirus Relief Fund require- among users. ments that states target certain populations and geographic areas for assistance and vaccination. California Health Care Foundation www.chcf.org 20 $ Provide incentive "carrots" for participation in the What California Can networks and use enforcement "sticks" for entities that do not fully participate. Consider participating Learn from Other States in or organizing payer pools where only users of Leaders from the states interviewed for this report did the statewide network share proceeds, and charg- not see California's large size and wide variety of health ing participation fees and separate value-added data networks as insurmountable issues. Interviewees service fees to promote greater participation and see the question as not if California will act, but how sustainability. California will create a health data network in ways that benefit everyone. $ Take full advantage of federal funding, includ- ing funds from the Coronavirus Aid, Relief, and Based on lessons learned from implementing other Economic Security (CARES) Act and the Coronavirus statewide health data networks, interviewees offered Relief Fund (CRF), for investment in data exchange both high-level and specific insights. All agreed that capabilities and infrastructure. California should consider the following options: $ Use the forthcoming update of the State Medicaid Health Plan (SMHP), required under $ Establish a leadership role for state government in the HITECH Act and due to be submitted to CMS law. Keep the statute to top-tier policy issues such no later than March 2022, to take advantage of as governance, participation by providers and pay- 90% federal funding to help inform planning ers, consumer access to the data, data privacy, and processes for a statewide health data network. financing. The statute should describe the state role and the role of private and public partners with $ Recognize that the state needs to have a statewide regard to administration and operation of the state- system, called a master patient index, to associate wide health data network. all the health records for a patient, regardless of how individual systems identify patients, and make $ Buildin a mechanism for broad stakeholder partici- that a requirement of the statewide health data pation, oversight, and accountability. network. $ Recognize that use cases must drive the expan- While no consensus emerged among those inter- sion of health information exchange over time. viewed about whether California should pursue a Incrementally implement solutions, starting with a centralized model or operate as a hybrid network of problem most people believe should be addressed. networks, some did note that if California decided $ Move from planning to action by identifying a on a hybrid model, the hub could operate as a pass- unified agenda and priorities among private and through data highway and not a permanent data public entities and working to apply that agenda repository to avoid health plan and MCO concerns to the execution of a state framework. about not having complete control over their data. $ Identify outcomes or features needed for a viable statewide network rather than mandate spe- cific technologies and standards. California has the opportunity to include features that target the need for improved data sharing, including behavioral health and social determinants of health. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 21 Evolution of the Michigan Data Exchange The Future of Health Starting with existing networks. The data architec- ture of each of the statewide health data networks Information Exchange profiled in this report followed from, at least in The state leaders interviewed provided valuable part, what existed when that network formed. In insights about health information exchange over the Michigan, where multiple HIOs existed when the next five years: network was created, stakeholders recognized that many organizations had already invested in health $ There will be further consolidation of HIOs, partic- information exchange and that an entirely new cen- ularly given that funding will be subject to further tralized network ran counter to their interests. While requirements for expanded data exchange and those HIOs were allowed to sustain themselves, additional services that could be costly for the HIOs Michigan has seen significant consolidation of its networks since the end of ONC funding in 2014, to build and maintain. enabling those left standing to benefit from more $ Now that federal rules mandate that EHRs and favorable economies of scale. HIOs must be able to communicate with each Starting small and gaining trust. Michigan other (interoperability), the regulations are here to started to expand its services by implementing stay and will be the way to further improve health ADT alerts. That implementation got people used to working together and built trust, which in turn outcomes. enabled Michigan to use its health information $ Attempts to integrate behavioral health data and exchange capabilities to enhance its response to social health data with clinical information in net- COVID-19. Michigan does not routinely store data in its systems. However, data for use cases such works will continue to improve as stakeholders as COVID-19 identification, contact tracing, and resolve security, privacy, and patient consent issues. vaccinations required data be held for a period of $ States will continue to access enhanced federal time. Network participants were comfortable with their data being stored for a specific reason and funding from federal programs and CMS funding or time period during a public health emergency. As Medicaid projects, including health data networks. relationships allow, use case solutions and processes Yet there will be challenges, such as allocating costs continue to mature. between Medicaid and non-Medicaid populations for CMS funding. The way forward will not be without its challenges. Countering these headwinds that limit data sharing will be the work of leaders at every level. California Health Care Foundation www.chcf.org 22 Appendix A. Glossary of Terms All-payer claims database (APCD). A repository of Health information organization (HIO). Entities that health care claims administered by an agency and facilitate the exchange of patient health informa- established by law that requires all payers to submit tion among the enterprises composing a health care claims data, including demographic and health care delivery system. They can be community-based and codes that identify the services and time billed for nonprofit, and are known in California as regional each claim. HIOs. Application programming interface (API). Computer Health information network (HIN). A network of code that enables data transmission between one HIOs or other data networks connected by an entity software product and another. In this report, the term that coordinates data sharing among them. refers to the system that enables patients to eas- ily access their health records electronically using a Interoperability. The ability of different electronic sys- device of their choosing. tems to communicate and share information with each other. To achieve interoperability, EHRs and health Data application. A class of software designed to data networks need common standards or technology enable access to information electronically, such as a that can translate information so other systems can web browser. use it. Electronic health records (EHRs). Computer devices Use case. The resolution of a particular health care sce- and systems that providers use to record demographic nario by using health information data and exchange. and clinical patient data such as blood pressure, known health conditions, treatments, immunizations, and sometimes information like homelessness or food insecurity, also known as social determinants of health. Health information exchange (HIE). A technology- driven method that permits health care providers to securely send, receive, and share patient medical records and data electronically. The exchange stores patient health records submitted electronically by health care providers and others via EHRs in a data warehouse, or acts as a data highway that data flow through. The result is that health care professionals can access and share patient data. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 23 Appendix B. Federal Funding Opportunities for California Ultimately, to be successful, statewide health data Currently, other than COVID-19 relief funding, most networks need to have sustainable funding. A mix sources of federal funding require a state "match," and of federal, state, and participation fees along with none of them will cover the complete cost of statewide high participation has provided the four statewide health network development. Medicaid is the largest networks profiled in this report with a sustainable busi- source of federal funding available to states for health ness model. It is critically important for California to data network development and operations. Table B1 act now to tap into several sources of federal funding identifies the source and percentage of federal funds to support health information exchange. available for Medicaid-related projects. Table B1. Sources of Federal Funds FEDERAL FEDERAL FUNDING MATCH AVAILABLE STATE-BASED ENTITY PURPOSE CMS/Medicaid HITECH Act 90% No set State Medicaid To administer the Promoting Interoperability Program. amount* Agency Funding available only for close-out activities and 5-year State Medicaid Health Plan (SMHP). MES Projects 90% No set State Medicaid For the design, development, and implementation (DDI) amount Agency of new Medicaid enterprise systems (MES) projects. MES Maintenance 75% No set State Medicaid For the ongoing maintenance of MES. and Operations amount Agency Medicaid Program 50% No set State Medicaid General administrative funding. Administration amount Agency Coronavirus Relief Fund† ONC for HIE 100% $62.4M State Medicaid Operating budget and for the development and Agency advancement of interoperable HIT (details TBD). Public Health 100% $73B Various state For COVID-19 response, including vaccine distribution, departments, under testing, and contact tracing. Also for mental health HHS, including and substance use services and support. Funds may public health and be used to develop specific data functionality to meet behavioral health COVID-19 response. Broadband and 100% $7B Broadband To improve broadband coverage. Telehealth providers, provider organizations *Main funding ends September 2021; SMHP funding ends March 2022. † Individual components end late 2021 through early 2023. California Health Care Foundation www.chcf.org 24 Centers for Medicare & Medicaid $ California could leverage the 90% federal funding Services Funding to conduct a stakeholder process that inventories the myriad health data systems and identifies where The level of CMS funding available for state Medicaid the state wants to be in five years, the gaps from programs is based on the annual CMS appropria- the as-is to the "to-be" vision, and what actions tions in the federal budget. Generally, there is no set need to be taken to fill the gaps. amount of funding for each CMS program per se. This section will describe the percentage of CMS funding applied to the cost of Medicaid projects, including 90% Federal Funding for Medicaid Enterprise statewide health data network projects that meet fed- Systems (MES) Projects34 eral requirements. For example, projects that qualify Percentage. The 90% federal funding is available to for 90% federal funding can expect CMS to pay 90% of new Medicaid design, development, and implementa- the total cost, with the state paying the 10% "match." tion (DDI) projects for claims, enrollment, prescription drug management, HIEs, public health, and related Conditions. There are two major CMS requirements system projects. that generally apply to get federal funding: Example projects: $ The Medicaid agency must maintain accountability and direction of the project and program $ Sending alerts to Medicaid providers for care man- ager follow-up when a Medicaid member visits the $ The federal funding can be used only to pay for the emergency department. portion of the project that benefits the Medicaid population (cost allocation) $ Master provider index system: A tool that care managers or patients check to locate Medicaid pro- viders in their area, and to find providers available 90% Federal Funding for the Health Information to see new Medicaid patients. Technology for Economic and Clinical Health $ Systems that integrate a PDMP registry with a state- (HITECH) Act,33 Program Administration of the wide health data network to enable prescribers and Promoting Interoperability Program dispensers to check before issuing opioid drugs. Percentage. This 90% federal funding is available for state Medicaid agencies to administer the Promoting Duration. The availability of the 90% federal funding Interoperability Program. (The 90% federal funding is ongoing. ends September 30, 2021, except for close-out activi- ties and a five-year HIT plan due in 2022.) 75% Federal Funding for Maintenance and Funding example. At this late stage, the 90% fed- Operation of Medicaid Enterprise Systems eral funding is generally available only for Medicaid (MES) program close-out activities. However, a significant Percentage. This 75% federal match is to maintain close-out activity is the development and submission and operate "fully functional and certified" DHHS of an updated five-year State Medicaid Health Plan systems. (SMHP), which consists of identifying all current health information activities and systems in the state, includ- Duration. The 75% federal funding is ongoing and ing claims, clinical records, Medicaid enrollment, and does not have an end date. claims system, and private and public health–related systems and network. The updated SMHP is eligible Projects or systems that are fully functional and cer- for the 90% federal funding through March 2022 when tified by CMS move from 90% federal MES funding the SMHP must be submitted to CMS. to 75% federal funding. Fully functional is defined as Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 25 the "go live" date, plus an additional approximately Federal Funds Under the CARES Act and 90-day stabilization period and then at least six months Coronavirus Relief Fund of operations. The certification process consists of the state working with CMS to determine the cost of the Percentage. 100% federal funding project that benefits the Medicaid population (cost allocation) and to develop outcomes and measures Duration. The March 2020 Coronavirus Aid, Relief, and that the state reports on to demonstrate progress Economic Security (CARES) Act provided significant (e.g., the percentage of prescribers and dispensers emergency funding for COVID-19 response through checking the prescription drug registry system before December 2020.35 The Coronavirus Relief Fund (CRF), drugs are prescribed or dispensed, as confirmed by a which was part of the December 2020 annual federal quarterly audit). budget law36 extended CARES Act projects through December 31, 2021. It also appropriated new funding to be used by December 2021 through early 2023, 50% Federal Funding for Medicaid Program depending on the program. Administration Percentage. The 50% federal match is for general The CRF makes specific appropriations for states to administrative functions performed by the Medicaid secure funding for health data networks and data agency, such as Medicaid staff assisting health care exchange. Some of the funding will come as a "pass- providers to enroll in order to serve Medicaid patients, through" to states under block grants or other means, or auditing for fraud, waste, and abuse. while other funding may require states to make grant or other applications. (Some funding allows for non- Duration. Administrative funding is ongoing and does government entities to apply for grants.) Below is a not have an end date. brief high-level overview of CRF funding relevant to health data networks and how they can improve data Note. The 50% administrative match is to administer sharing and health outcomes. the Medicaid program. It is different than the Federal Medical Assistance Percentage (FMAP), the percent- Some of the funds available are targeted to support age that the federal government pays for Medicaid vulnerable or rural populations. Having a statewide provider services. For example, a Medicaid provider health data network will allow states to better serve sees a Medicaid patient for an ankle sprain and bills these populations and be in compliance with funding Medicaid the allowed $100 rate. The federal govern- requirements. The four states profiled in this report ment pays its share, say $50, and the state pays the will be able to provide the data to meet these require- other $50. The FMAP is state-specific, ranging from ments, which cannot be accomplished without a 50% to 77%, with California's FMAP being 50%. statewide health data network system. Office of National Coordinator for Health Information Exchange The Office of the National Coordinator for HIE (ONC),37 a division of CMS, leads the effort to have all EHRs able to share data with other EHRs (interoperability), which generally happens at the HIE (health data network) level. The CRF appropriates $62,367,000 for agency operations, which includes an unspecified amount for grants, contracts, and cooperative agreements for the development and advancement of interoperable California Health Care Foundation www.chcf.org 26 health information technology. (Note: As of the date $ $4.25 billion for the Substance Abuse and Mental of publication of this report, the particulars of the Health Services Administration to provide increased grant process are still being developed.) mental health and substance abuse services and support, which includes specified dollar amounts or $ For states that want to get grants for statewide percentages for tribal and state projects and clinics. health data network projects, they will likely have A certain percentage must be distributed to states to apply for the funding (through the Medicaid with the highest mortality rates related to opioid agency) and meet the CMS condition that the use disorders, and a certain percentage to all states Medicaid agency retain accountability and direc- for treatment (including medication), referral, and tion over the health data network. behavioral health services for those in treatment programs, support, and medical screening. Public Health $ The $4.25 billion for substance use is particularly Although the CRF makes dollars available to private important to states, as there are percentage and and nonprofit payers and health care facilities and dollar appropriations specifically earmarked for systems, the majority of the funding is either appro- state grants, including at least $4 million for each priated directly to state, local, and tribal governments state for substance use disorder treatment. The or appropriated to public agencies to administer the Medicaid agencies for the four states profiled in grants and projects. Some of these funds are avail- this paper will be able to apply for grants, for able to state DHHS agencies, including projects that example, that will enable their statewide health develop specific functionality in a statewide health data network to develop the provider index API data network (provided it meets the CMS condi- that will be used to identify available treatment tions). The CRF appropriates $73 billion to the US providers and programs. Department of Health and Human Services to support public health, including: Broadband and Telehealth Reliable access to broadband is critical for providers $ $8.75 billion to the Centers for Disease Control and and patients to have access to connected data sys- Prevention (CDC) to support federal, state, local, tems that can share data. The Coronavirus Relief Fund territorial, and tribal public health agencies to dis- has made available $7 billion to expand broadband tribute, administer, monitor, and track coronavirus access for students, families, and unemployed workers. vaccination to ensure broad-based distribution, While this funding typically flows through broadband access, and vaccine coverage. It includes $300 mil- providers or individual provider organizations, state lion for a targeted effort to distribute and administer leadership could help coordinate these efforts to meet vaccines to high-risk and underserved populations, specific state goals. These funds include: including racial and ethnic minority populations and rural communities. $ A new $3.2 billion Emergency Broadband Benefit that will provide $50 per month for broadband for $ $25.4 billion to the Public Health and Social low-income families Services Emergency Fund to support testing and $ $300 million for rural broadband contact tracing, to effectively monitor and sup- press COVID-19. This fund includes $2.5 billion $ $250 million for expanding the Federal for a targeted effort to improve testing capabilities Communications Commission's telehealth program, and contact tracing in high-risk and underserved which pays a portion of a health care provider's populations, including racial and ethnic minority broadband and telehealth equipment populations and rural communities. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 27 $ $65 million to improve mapping that shows where The four states highlighted in this paper, which have broadband is and is not, to better target areas statewide health data networks, gained significant where broadband investment is needed the most benefits for COVID-19 response activities. For COVID- 19 response, broadband is needed to trace, track, and These federal funds can be used to help pay for identify specific populations; administer vaccines; and upgrading internet services. The lack of reliable broad- report to public health agencies. Statewide health data band (high-speed internet) as a barrier to expanding networks greatly facilitate gathering and reporting HIE. Broadband is needed to electronically provide information to public health agencies by segregat- telehealth services like Zoom visits between provid- ing the aggregated data flowing into the network into ers and patients, remote patient monitoring for vital categories such as age, race, rural community, and signs, and transmitting lifesaving medical scans elec- ethnic minority population to better target COVID-19 tronically from accident sites to hospitals. None of response to high-risk areas and populations. A state- these activities can be done via telephone. Studies wide health data network can report information on a show that access to telemedicine results in improved global and individual patient level for the entire state. health care and patient safety by reducing Medicaid transportation costs as well as lost education and work time; avoiding expensive emergency room visits; and improving health care in rural areas with provider shortages, especially in the behavioral health fields.38 Broadband is critical in enabling access to tele- medicine and electronic exchange of data, which is especially important during the COVID-19 pandemic. Making funding available for broadband expansion also contributes to the number and type of health care providers who implement EHRs and connect to a health data network, both of which require internet services and have been identified by California stake- holders as an activity the state should engage in. California Health Care Foundation www.chcf.org 28 Appendix C. Interviewees California Association of Health Information Manifest MedEx Exchange Claudia Williams, CEO Robert "Rim" Cothren, principal, Cunning Plan; Paul Norton, director, Policy executive director, CAHIE Michigan Health Information Network California Department of Health Care Services Tim Pletcher, executive director Linette Scott, deputy director and chief data officer New York eHealth Collaborative California Public Employees Retirement System Valerie Grey, CEO Heather Readhead, MD, MPH, Nathan Donnelly, senior vice president, medical director of clinical programs Policy and Analysis Chesapeake Regional Information System Oregon Health Authority for our Patients Susan Otter, director and state coordinator for David Horrocks, president and CEO Health Information Technology Luke Glowasky, business analyst CyncHealth Jaime Bland, DNP, RN-BC, CEO Georgia Health Information Exchange Network Pam Matthews, executive operations officer Kaiser Permanente Jamie Ferguson, vice president, Health Information Technology Walter G. Suarez, MD, MPH, executive director, Health IT Strategy and Policy Teresa R. Stark, director, state government relations for Kaiser Permanente Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 29 Endnotes 1.Walter Sujansky, Promise and Pitfalls: A Look at California's 21.Index for Excerpts, healthit.gov. Regional Health Information Organizations, CHCF, January 22."Helpful Information About Health Information Exchanges 2019. (HIE's)," Lyniate, n.d.; and Strategic Health Information "What Is HIE?," healthit.gov, last reviewed July 24, 2020. 2. Exchange Collaborative, n.d. 3."What Is HIE?," healthit.gov. 23."Interoperability and Patient Access Fact Sheet," CMS, March 9, 2020. 4.Jim Maxwell et al., National Approaches to Whole-Person Care in the Safety Net (PDF), John Snow Inc., n.d. 24.Monica, "Social Determinants." "Policies and Technology for Interoperability and Burden 5. 25."Social Determinants." Reduction," Centers for Medicare & Medicaid Services (CMS), 26.Leaders from two additional states were briefly interviewed last modified February 5, 2021. because of the relevance of their governance models to 6."Policies and Technology," CMS. California. Oregon employs a statewide network-of-networks approach that features extensive stakeholder involvement, 7.Cindy Mann (director, CMS) to all state Medicaid directors, including an oversight council, specialized committees, SMD letter 11-004 (PDF), May 18, 2011; and "OMB Circular health industry group, a health policy board, and a health A-87 Revised," obamawhitehouse.archive.gov, last revised information exchange community and organizational panel. May 10, 2004. Georgia operates a network of networks with four regional 86 Fed. Reg. 10 (Jan. 15, 2021) (PDF); and Rules Committee 8. systems and five large health care systems that feed data Print 116-68: Text of the House Amendment to the Senate into the network. The Georgia Health Information Network Amendment to H.R. 133 (PDF), US House of Representatives, (GaHIN) has a unique business model in which members December 21, 2020. contract with the health data network vendor and sign a subscription agreement with GaHIN that provides oversight 9.Details on each state's statewide health data network can of the relationship. be found in the section "Four States with Robust Statewide Health Data Networks." 27."Health IT Data Summaries," healthit.gov, n.d. 10.For more information on these levers and how they're applied 28.MiHIN, n.d. in several states, see CHCF's Expanding Payer and Provider 29.CRISP, n.d. Participation in Data Exchange, which includes additional detail on Maryland and Michigan. 30.CyncHealth, n.d. 11.Christopher Jason, "Information Blocking by EHR Vendors, 31.NYeC, n.d. Health Systems Still Prevalent," EHR Intelligence, 32.New York law requires patient consent for data exchange, so January 11, 2021. the data exist in the QEs but are not generally accessible by 12.Both statutes (laws) and regulations (rules) have the force of others in the network until patients consent to having their law, which can be used to establish and enforce mandates. data exchanged. 13.Prashila Dullabh et al., Evaluation of the State HIE 33.Cindy Mann, state Medicaid director letter. Cooperative Agreement Program: Final Report (PDF), NORC, 34."Federal Financial Participation for HIT and HIE," CMS, n.d.; March 2016. Vikki Wachino (director, CMS) to state Medicaid directors, 14.Cindy Mann, state Medicaid director letter. SMD letter 16-009 (PDF), June 27, 2016; "Medicaid Enterprise System Solution/Module Contract Status Report," CMS, n.d. 15.CARES Act (PDF), H.R. 748, 116th Cong. (2020). Please note that the term Medicaid enterprise system is the 16.86 Fed. Reg. 10; and Rules Committee Print 116-86. umbrella term for Medicaid Management Information System and eligibility and enrollment contract information broken out 17.Kate Monica, "Social Determinants of Health Data Deemed by operations and maintenance and by design, development, Most Difficult to Share," EHR Intelligence, May 20, 2019. and implementation activities. 18."What Are the Benefits of Health Information Exchange?," 35.CARES Act, 116th Cong. healthit.gov, last reviewed January 8, 2019. 36.Jared B. Rifis et al., "Federal COVID Relief Bill Passed 19."Health Information Exchange (HIE)," Univ. of South Florida, by Congress - December 2020," National Law Review, last updated November 2, 2020. December 22, 2020. 20.Index for Excerpts from the American Recovery and 37."Funding Announcements," healthit.gov, last reviewed Reinvestment Act of 2009 (ARRA) (PDF), healthit.gov, last January 19, 2021. reviewed February 19, 2009. California Health Care Foundation www.chcf.org 30 38."How Better Broadband Access Will Help Telemedicine Reach Its Full Potential: Increasing Telemedicine Adoption Rates with Internet Access," InTouch Health, n.d.; "Telehealth Evidence Map," Agency for Healthcare Research and Quality (AHRQ), August 11, 2015; Annette M. Totten, Marian S. McDonagh, and Jesse H. Wagner, "The Evidence Base for Telehealth: Reassurance in the Face of Rapid Expansion During the COVID-19 Pandemic," AHRQ, May 14, 2020, doi:10.23970/AHRQEPCCOVIDTELEHEALTH; "Federal Communications Commission, US Department of Health and Human Services, and US Department of Agriculture Team Up for Rural Health Initiative," press release, US Dept. of Health and Human Services, September 1, 2020; and Tyler Cooper, "Widespread Telehealth Adoption in Rural Communities Requires Widespread Broadband Availability," BroadbandNow, April 6, 2020. Designing a Statewide Health Data Network: What California Can Learn from Other States www.chcf.org 31