Editor’s Note: In a new report, prepared for the California Health Care Foundation, Manatt summarizes the results of interviews with dozens of health care leaders and stakeholders, as well as insights gained through an analysis of health information exchange (HIE) programs in multiple states. The report, summarized below, defines critical data exchange issues and proposes a set of policy options to address the shortcomings of California’s HIE environment. Click here to download the full report.
The efficient, effective and equitable delivery of care is vital to the well-being of all state residents and necessary for a strong and vibrant economy. It requires information to be exchanged among various groups so that medical, behavioral, social services and public health professionals have the information they need to make informed decisions that impact the lives of every resident.
Today, access to critical information is limited in California, with data exchange confined to a subset of clinical patient information shared mostly among larger clinics and hospitals that have federally certified Electronic Health Record (EHR) technologies. The health information exchange (HIE) ecosystem is composed of a combination of direct exchange between providers, the use of national networks and over 15 regional health information exchange organizations (HIOs). This fragmented model delivers inconsistent and incomplete solutions. Coupled with restrictive, confusing and ambiguous data exchange rules, the exchange environment does not adequately enable initiatives to improve care quality; enhance access to medical, social and public health services; reduce disparities; and lower costs.
To address the shortcomings of the HIE environment, three data exchange issues need to be resolved:
1. Data fragmentation. There are currently incomplete and isolated islands of data available through California’s HIE ecosystem. This fragmentation creates inequities, and results in incomplete data sharing, access and use.
2. Exclusion of exchange sectors. Regional and national HIE networks by and large do not support data exchange amongst behavioral, social service and public health organizations. As a result, critical information vital to addressing inherent inequities in access, outcomes and social determinants of health is not accessible to health care providers.
3. Complex and onerous data exchange rules and regulations. There are a range of restrictive, confusing and ambiguous state and federal laws and rules that govern different types of data access and exchange. As a result, many stakeholders are reluctant to participate in data exchange over concerns of client privacy and liability.
Real-Life Scenarios: Challenges and Impact
The report includes four real-life scenarios that highlight challenges, expose their impact, and help provide direction on specific actions policymakers may consider to address HIE shortcomings.
1. Disaster Response
California continues to see a dramatic increase in natural and man-made disasters that have catastrophic impacts on its residents. Victims of disasters often find themselves evacuated to unfamiliar environments and heavily reliant on medical and social services for care and basic necessities. HIE is a critical tool to ensure that providers have access to the patient’s clinical record so that they can deliver safe and appropriate treatment.
As large-scale natural disasters increase in frequency and severity, the need for HIE infrastructure that enables care providers to diagnose, treat and triage victims becomes an even greater priority. Factors limiting the effective use of HIE in support of disaster response include:
- Data fragmentation. Gaps in available clinical data impact providers’ ability to properly diagnose and treat patients, resulting in higher costs, inferior outcomes and an increased burden on critical health system infrastructure.
- Exclusion of exchange sectors. Most information exchange efforts don’t provide access to important social services information or link medical and behavioral health data with emergency response systems. Supporting the complete needs of people displaced by disasters requires access to their social services and behavioral health data so that emergency responders can make more informed decisions and get disaster victims what they need.
- Complex and onerous data exchange rules and regulations. The issues of data access are compounded by consent requirements that may prohibit data sharing, especially for patients unable to provide written consent in an emergency.
2. Pandemic Response and Public Health Reporting
The pandemic elevated awareness of the importance of robust HIE to rapidly identify, track and respond to surges in COVID-19 cases and mobilize resources to contain its spread and impact. Leaders need access to timely testing information from labs, providers and hospitals to identify new case clusters and understand where critical resources are available. Managing the rollout of statewide testing, contact tracing, isolation support and vaccination programs similarly requires reliable and timely information so that state, county and health care provider leaders can organize and coordinate response efforts.
Like most states, California has experienced a myriad of challenges associated with the COVID-19 crisis. The potential impact that the current fragmented data exchange model has had is substantial.1 The core underlying issues include:
- Data fragmentation. CalREDIE and the California Immunization Registry (CAIR) systems were not designed to connect, consume and incorporate health information from HIOs or EHRs at the scale needed to tackle a global pandemic. As a result, critical information is not readily accessible, and public health officials are challenged in organizing their response to the crisis.
- Exclusion of exchange sectors. A lack of available social and behavioral health data restricts public health officials’ ability to identify and address gaps in social and mental health supports.
3. Serving Patients With Complex Needs
Patients with serious medical and behavioral health conditions and social needs are among the most under-resourced residents. To deliver the safest and most effective care, providers need to coordinate care and have access to information from all the providers serving their patients. The current HIE ecosystem is not sufficient to support the effective management of patients with complex conditions. The core issues include:
- Data fragmentation. Since the cost of participating in data exchange can be prohibitive for smaller safety net providers, secure information sharing is often limited to larger health systems and clinics, resulting in a lack of coordination across the full clinical care team.
- Exclusion of exchange sectors. Behavioral health and social service providers also typically lack adequate technology infrastructure to participate in data exchange. As a result, current data exchange is mostly limited to the physical health record and does not include mental health, substance use disorder or social services information.
- Complex and onerous data exchange rules and regulations. Restrictive and often confusing federal and state data privacy policies regarding appropriate use of patient information often prevent access or create significant enough concerns about liability that providers elect not to connect to or access information from other providers even when it is available.
4. Quality Reporting and Value-Based Care
Value-based care initiatives, including quality improvement and price transparency programs, can significantly drive down costs and deliver better clinical outcomes.2 3 4 Data exchange can support these initiatives by providing payers and health care purchasers with greater access to information necessary to assess and measure quality of care and validate models that decrease unnecessary costs and improve outcomes. Improving consumer access to clinical, cost and quality information can also empower them to make more informed decisions regarding their care choices.
Quality reporting and value-based care initiatives are often impeded by a lack of access to clinical outcomes data in ways that patients and payers can use. These challenges are primarily driven by:
- Data fragmentation. Lacking access to clinical information from all providers, patients, payers and purchasers have an incomplete health record and can’t make fully informed decisions.
- Exclusion of exchange sectors. Regional HIOs and national networks are primarily designed to share clinical data between providers. Consumers, health care purchasers and health plans generally don’t have access to them. Without access to clinical data, purchasers and health plans are limited in their ability to detect and address disparities in outcomes, identify best practices, develop new payment models, organize and manage high-quality provider networks, or understand which providers deliver high-quality care.
Key Actions for Consideration
Interviews with numerous stakeholders and extensive research into other states’ HIE activities suggest that comprehensive statewide HIE is best supported when a range of policy, contracting and financing levers are used together to advance data exchange. States with more robust HIE have established strong leadership structures within government to guide policy and program actions, address HIE gaps and overcome barriers. In most cases, these states have enacted new laws, promulgated rules to encourage or require HIE, established HIE contracting provisions in public purchasing programs, and directed state investment in technology, services and training. The following are actions policymakers could consider to address deficiencies in HIE ecosystems.
1. Establish an Office and Advisory Board within state government charged with advancing HIE through alignment of financing, contracting and policy levers across state agencies.
California could establish an Office within state government charged with establishing the state’s vision, goals and priorities for advancing health information exchange. The Office could be endowed with rulemaking authority that aligns regulatory, contracting, licensing and financing levers available to state government agencies to advance HIE. It could also be charged with developing recommendations to harmonize state law that conflicts with federal law. In addition, statute could direct the Office to develop clear HIE guidance and technical assistance to state agencies and stakeholders.5
The Office’s authority could be crafted to be broad enough to direct health plans funded through publicly purchased coverage programs and both health plans and providers licensed by the state to ensure consistency in the implementation and enforcement of HIE rules. The Office’s authority could also allow it to define consistent HIE contracting requirements so that the purchasing power of state agency procurements can be aligned to direct contractors to consistently carry out state priorities.
To get input from experts and affected stakeholders, the Office could be guided by a multi-stakeholder Health Information Exchange Advisory Board that brings together state and county agencies; physical, behavioral and social service providers; consumers; and others with HIE expertise. The Board could be charged with developing recommendations and feedback to the Office’s leadership.
2. Establish statewide health information exchange requirements, incentives and penalties to encourage broad HIE participation by health plans and providers in health care, social service, emergency response and public health programs.
The state could pass new law requiring hospitals, providers and health plans to participate in health information exchange activities that meet specified state health care, public health, social service and emergency response goals. Requirements could be designed by the new Office with input from its Advisory Board. A number of other states have passed legislation requiring participation in information sharing activities and can serve as examples.6 7 Mandates on their own, however, are insufficient. States with more comprehensive HIE have coupled mandates with contracting and financing levers to stimulate participation in data sharing activities.8 9
3. Establish financing programs that support statewide physical, behavioral and social service data exchange.
Most behavioral health and social service providers don’t use information systems that can meet national data exchange standards, and many continue to use paper-based records. While most hospitals, providers and specialists now have certified electronic health records (EHRs), many still don’t routinely exchange information with other providers who care for the same patients. As a result, critical physical, behavioral and social service information is inaccessible to the broader care team, public health agencies and emergency responders. Policymakers could establish financing programs to help providers implement robust information technology to support the secure sharing of data with other physical, behavioral and social service providers and public health agencies. It also could direct the new Office and Advisory Board to identify financing streams and align program requirements to maximize their impact.
4. Upgrade public health and emergency response information exchange infrastructure.
The pandemic laid bare the inadequacies of California’s public health information exchange. The state’s ongoing experience with wildfires has also made clear the need to expand state and local emergency medical service data exchange infrastructure.
Policymakers could leverage federal funding from the Centers for Disease Control and Prevention (CDC), supplementing it with state resources to upgrade state and county surveillance, reporting and emergency response systems. Publicly funded purchasers could also incentivize providers to share patient information with emergency response, public health and syndromic surveillance systems.
5. Harmonize state privacy rules and regulations with federal law.
Many state laws were written before electronic data sharing was possible, making it difficult for organizations to interpret and understand data sharing implications, including the threat of liability. California could enact law based on recommendations made by the new Office and its Advisory Board to identify conflicting and ambiguous state health information privacy and security rules, and update California Health & Safety code to harmonize it with federal law.
6. Establish statewide, universal consent policies.
The lack of a comprehensive and consistent state privacy and security framework and universal informed consent policies that support physical, behavioral, social service and public health information sharing impedes data exchange. New state law could charge the new Office and its Advisory Board to define requirements for a statewide universal informed consent model and set of standard consent authorization forms. In addition, by applying contracting and licensing levers at their disposal, state agencies can incentivize and require their use by contractors and licensed entities. New law could also require participation in the California Trusted Exchange Network (CTEN) to support exchange between California HIOs and national networks, and adopt the CalDURSA data sharing agreement as part of a broader set of data sharing and consent policies.10 11
To achieve the promise of health information exchange, states need bold leadership, a clear vision, measurable goals that guide policy and financing decisions, and programs that enable comprehensive statewide data exchange. To address HIE challenges, states could enact new law that establishes an Office within state government with authority to direct state agencies and use a variety of financing, contracting and policy levers to stimulate HIE infrastructure and programs. But states need to provide enduring leadership and financial support to incentivize the adoption and use of technology that securely connects providers to each other.
6 “State Health IT Policy Levers Compendium,” Office of the Coordinator for Health Information Technology. Available here.
7 “Statewide Health Information Exchange Act,” N.C. Gen. Stat. §§ 90.414.1–12. 2015. Available here.
8 “Expanding Payer and Provider Participation in Data Exchange: Options for California,” California Health Care Foundation and Manatt Health. Nov. 2019. Available here.
9 “The Association Between State-Level Health Information Exchange Laws and Hospital Participation in Community Health Information Organizations,” B. L. Brown-Podgorski, K. Hilts, B. Kash, C. Schmit and J. Vest. Dec. 5, 2018. Available here.