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CASE STUDY: THE LOUISIANA PUBLIC HEALTH INSTITUTE (LPHI) AND THE GREATER NEW ORLEANS HEALTH INFORMATION EXCHANGE (GNOHIE)

Interviewees: Tom Carton, PhD, MS, Executive Director; Salvatore J. Peraino II, MS, Director of Business and Controller; and Kyla Mor, MSPH, Director of Product Development

ABSTRACT

The Louisiana Public Health Institute (LPHI) serves a unique function for the State of Louisiana, partly due to Hurricane Katrina’s devastating effects. The 2005 Hurricane had singularly catastrophic effects on the state’s health care infrastructure and human health. It led to the founding of the Greater New Orleans Health Information Exchange (GNOHIE) in 2010 as a data infrastructure apparatus using data and technology to facilitate innovative health data sharing between private hospitals and community health clinics. These endeavors inform the GNOHIE’s objectives of improving population health, reducing health costs, and enhancing the patient experience. Today, with several full-time employees and financial support from membership dues and state and federal funding, the GNOHIE provides critical data services and produces insights from patient-level data and health systems interactions to inform population health efforts and improve integrated care quality in Louisiana. It has addressed technical and operational barriers that can be helpful to other nascent and mature health information exchanges (HIEs).

BACKGROUND

In 2010, the LPHI, a 501(c)(3) nonprofit organization, was awarded a $13.5 million Beacon Site grant by the Office of the National Coordinator for Health Information Technology to establish the Crescent City Beacon Community (CCBC) to improve population health in Jefferson and Orleans parishes in Louisiana. From 2010-2013, the CCBC worked with more than 150,000 patients and 150 providers to enhance primary care coordination through data sharing between private and community providers and reduce chronic disease burden (Khurshid and Brown, 2014). Among CCBC’s accomplishments were:

• Creating a real-time automatic encounter notification system to facilitate care transitions from emergency care to primary care clinics;
• Implementing clinical transformation programs at 16 clinics with significant improvement in several outcome measures, including coordination of care and completion of follow-up visits;
• Establishing the GNOHIE, its clinical data exchange platform; and
• Storing more than 900,000 patient records from hospitals and outpatient clinics (LPHI, 2016).

In 2013, after completing the initiative, the CCBC’s administrative committee voted to form a separate nonprofit organization, the Partnership for Achieving Total Health (PATH) program, to manage the GNOHIE’s operations and strategy. PATH functions as the organizational home for the GNOHIE. Since the closeout of the CCBC grant program, the GNOHIE has been transitioning to a stable financing model via a combination of membership dues and state and federal grants.

The GNOHIE’s mission is to advance the Triple Aim of improving population health, reducing health costs, and enhancing patient experience. The GNOHIE advances its mission by connecting providers, facilitating secure exchange of patient data, and delivering actionable insights from the information that is exchanged. This aim is underpinned by a focus on health equity, especially after the 2005 hurricane illuminated stark disparities in receipt of timely, coordinated primary care.

Participating organizations sign agreements that cover the contractual and data-sharing parameters of membership. Once an agreement is signed, the GNOHIE technical team works with partners to establish a data connection, which are implemented in varying ways depending on data assets and needs of participating organizations. Participants send data to GNOHIE via the Health-Level 7 (HL7) interface that works with EHR software to support data exchange, such as clinical data extracts supplied by specialized population health management software, or a patient demographic file. GNOHIE sends notifications back to participants through EHR

and software interfaces, and through secure direct mail accounts. Analytics and reports are sent to participants through encrypted email or made available through user-specific access to a web-based business intelligence application. Uses of these reports and notifications are detailed below.

DESCRIPTION

The GNOHIE team includes a staff of 10, including positions in technical operations, product management, compliance, and business and finance. Providing oversight and strategic advice is a six-person board of directors, comprised of health care leaders in Louisiana largely focused on under-resourced patient populations. Collectively, board members provide perspectives on health promotion and prevention; primary care access; health equity and community health services; patient, family, and community advocacy; care management; research; and policy.

The GNOHIE receives Admit, Discharge, and Transfer (ADT) data and clinical data from participating organizations and shares it with other treating providers to support care coordination and clinical management across care settings. Structured data elements conform to existing health data interoperability standards, such as HL7. The GNOHIE, in collaboration with its partners, has developed an extensive set of policies and standard operating procedures to govern data sharing and access, which resulted in the GNOHIE’s terms and conditions policy governing its data use and sharing (GNOHIE, 2018a). The GNOHIE employs an “opt out” patient consent policy, which permits data sharing for patients who receive care at participating organizations. Patient information is only shared with other treating providers and, if patients do not want their information shared, they can opt out at any time. Participating organizations must comply with the necessary laws and regulations, including the Health Insurance Portability and Accountability Act (HIPAA). On the other hand, data providers retain their right to own their data while granting PATH, as a custodian of the data, the ability to share it with the GNOHIE. Meanwhile, the GNOHIE’s obligations include compliance with the terms and conditions and laws and regulations; maintenance of the GNOHIE and

its services; protection against malicious software, viruses, and other threats; support through the training of personnel, telephone and email support; and periodic audits, investigations, and reports. In short, the GNOHIE complies with or exceeds the standards listed under HIPAA through its data security and transparency policies.

Transparency is an essential facet of health information exchanges nationally and for the GNOHIE. The GNOHIE provides a public complaint form for individual patients, member organizations, or whistleblowers to communicate concerns regarding opting out of sharing data, data privacy, customer service, and other issues. The form allows for complaints to be made anonymously, thereby reducing the barriers to filing a complaint. Additionally, the GNOHIE provides a landing page with an embedded opt-out form, its phone number, and a link to frequently asked questions from patients and families (GNOHIE, 2018b).

The constellation of policies and processes described above illuminate the technical and sociological complexity of maintaining a health information exchange. These policies accurately reflect the interviewees’ experiences in creating the technological, legal, and policy structure of the GNOHIE. Given that the policies illustrate the GNOHIE’s thoughtful consideration of real and potential issues in sharing and exchanging data based on their direct experience, this can provide guidance for similar health information exchange efforts—both nascent and mature.

The GNOHIE acts as a conduit across the care continuum, providing and facilitating information exchange services for primary care and behavioral health, hospital and health systems, social services, health plans, accountable care organizations, and correctional health care providers. Importantly, this attenuates the need for each provider or system to set up its own distinct infrastructure. Many of the infrastructure features and functions are housed in the GNOHIE, as enumerated below. Key features that underpin the GNOHIE’s activities and service offerings include the following:

• Master Patient Index, an interoperable platform that supports unique patient matching across records shared by participating organizations. This index enables the GNOHIE to send participating entities the most updated information on each patient when required and ensures health care data is ac-

curately attributed to the correct individual.

• Data Integration with various EHRs and population health management systems. These integrations enable bidirectional data exchange with participating organizations to supply patient health information to the GNOHIE and to deliver encounter notifications back to the provider. In turn, users can examine GNOHIE data within their existing systems and workflows or at the population health level, such as viewing rates of influenza-like illnesses.
• Secure Direct Mail, a secure, HIPAA-compliant web-based mail service that facilitates the exchange of protected health information and other data. This system can also include multiple direct mail accounts to ensure the flexible transmission of data. As part of the value proposition, this ability to send encrypted information enables an organization with less robust IT capabilities to log into the Exchange and initiate secure mail and secure data transfer.
• Encounter Notifications, powered by transmission of ADT data across care organizations and settings. Participating providers use the notifications to monitor hospital utilization; facilitate and track timely post-hospital follow-up appointments; and remain informed about care delivered at external facilities, including both hospital and ambulatory care settings.
• Reporting and Analytics, leveraging the same patient data delivered through encounter notifications and making it available to users in a longitudinal format for an entire population of patients. Reports include both aggregate and patient-level data to assist participating organizations to efficiently delegate tasks, such as scheduling of follow-up appointments, and to inform population health strategies and resource allocation.

Taken together, these utilities ensure accurate identification of patients as they receive care in various systems and sites, and support community providers as they monitor individuals’ health needs. For example, if a patient is discharged from a hospital, a primary care provider utilizes GNOHIE-generated discharge notifica-

tions as a prompt to schedule follow-up appointments. The hospital is notified accordingly, via GNOHIE’s ambulatory notifications, whether a follow-up visit occurred. Hence, care coordination information about the patient is transferred automatically without the need for duplicative data entry and validation processes. Consistent with the GNOHIE’s stated mission, this supports both quality and safety, and can reduce administrative costs associated with provision of health care—an important aspect of the value they provide for their members and partners.

To support deployment and maintenance of the GNOHIE, the LPHI has benefitted from the cooperation between federal, state, and local governments. Their cooperative endeavor agreement was funded with a 90/10 matching fund from the state of Louisiana and the federal government, which emerged from the Health Information Technology for Economic and Clinical Health Act. Under this project, the Centers for Medicare & Medicaid Services paid 90% of funds related to the GNOHIE, while the state of Louisiana paid 10% of these funds. The GNOHIE also cooperates with the Louisiana state government on analyzing Medicaid data, which is shared for analysis then returned. These reports enable a statewide culture of learning and improvement, exemplified through insights from influenza surveillance analytics and an operational dashboard on Medicaid enrollees using HIE data, as two examples. Throughout the pandemic, rather than shifting health information exchange resources to COVID-specific needs, GNOHIE continued to focus on their core work to advance and expand care coordination capabilities, regarded by their stakeholders as a top priority.

Before the GNOHIE was founded, the team needed to create the requisite legal and regulatory scaffolding to ensure compliance in patient privacy data and sensitive data controls. Other efforts included creating rules governing information exchange, patient attribution, and navigating myriad technical and business implications of data sharing. These efforts required the GNOHIE team to navigate a complicated regulatory ecosystem, especially in the absence of accessible international data- sharing frameworks, such as HL7. Additionally, the incentive structure does not cover the real costs of data sharing, given the evolving and complex regulatory environment.

Even after the GNOHIE’s founding, variable interpretations of federal laws and regulations have presented considerable barriers to data exchange activities. HIPAA has been a barrier for the GNOHIE due to its multiple grey areas, such as rules around sensitive data and various interpretations by entities’ legal counsels. In aggregate, the law is often invoked as a reason not to share data, and there is no mechanism to provide authoritative clarification, unification, and alignment on these debates. Other primary legislative and regulatory texts, such as Title 42 of the Code of Federal Regulations Part 2, which regulates confidentiality of information related to substance use, continue to provide vague direction despite an update featured in the 2020 Coronavirus Aid, Relief, and Economic Security Act.

Government guidance, such as the Trusted Exchange Framework and Common Agreement (TEFCA), is, according to the GNOHIE team, considered an attempt to align health data sharing, but may lack the legal and regulatory power to mandate cohesive collaboration on data sharing (HealthIT.gov, 2021). Frameworks such as TEFCA need to be less broad and include strong regulatory mandates to ensure success. If not, the GNOHIE team observed, disparate interpretations of regulations and inconsistent efforts to expand the siloed health data-sharing ecosystem will persist.

FUTURE DIRECTIONS

Despite HITECH’s financial opportunities and its attempt to promote EHR integration, current financial and regulatory incentives do not enable and facilitate data sharing. According to the GNOHIE team, policies need to help align incentives to offset real and perceived costs of data sharing. The GNOHIE team observed that despite conversations at the federal level about prioritizing data sharing and interoperability, this priority was not attached to policies and actions to clarify and reform the regulatory environment. While they cited important benefits of HITECH and interoperability legislation, the accompanying incentive structure and operational aspects have received less attention. In particular, the GNOHIE team indicated that there are real costs associated with data sharing, and no penalties for not exchanging data, so these as-

pects create friction. Without this regulatory clarity, the GNOHIE team added, data-sharing vendors can still charge exorbitant fees to health systems to encode large amounts of data for exchange purposes. Because of these costs, changing vendors and incentivizing data-sharing efforts is tremendously difficult for exchanges like the GNOHIE. More recently, the requirements imposed by the information blocking rule may offer a stronger push to move the needle on interoperability (Federal Register, 2020).

Before embarking on data-sharing projects, interviewees stressed that organizations should understand that exchanging data is not solely a technology-based endeavor. Due to various societal, legal, and governance-related implications of data sharing, organizations should prepare resources and anticipate the consequences of participating in data sharing, and gain buy-in for the vision and value proposition for data sharing, even as the technical details are worked out. Furthermore, to realize its full potential, data sharing and exchange should not be relegated to a minor project or priority within a health system or organization. Integration with other major priorities such as payment for performance and value-based care initiatives could embed data sharing as part of an organization’s priorities.

Development of an HIE—or any similar shared-data resource such as an All-Payer Claims Database or research data enclave—should offer something of real value to each data contributor. The upfront work of understanding and co-creating the benefits and anticipating the range of technical, procedural, financial, and sociocultural barriers has been demonstrated by the GNOHIE as a formula for success.

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