Citation: McGowan, V. (2021). Transparency of the sustainability of state health information exchanges regarding services, governance, reach and funding. Online Journal of Nursing Informatics (OJNI), 25(1), https://www.himss.org/resources/online-journal-nursing-informatics
Statewide health information exchanges (HIEs) are taking on increased importance due to their perceived effectiveness for increasing information availability and transfer which in turn benefits patient care. Therefore, it has never been more relevant to contribute to literature and best practices regarding the transparency of the sustainability of these vital assets to foster public trust. To that end, this paper describes a study of statewide or representative HIE websites, with each state represented in the sample, to assess how transparent these organizations are in relaying their services, governance, reach and funding to health care provider and public audiences. While the deployed sample, selected to insure accurate representation of the state or largest regional HIE in the state, is promoting good practice in their education mission and descriptions of privacy, reach and patient-centered interactions, they are slightly less transparent about the exact nature of some of their services and show significantly less transparency regarding governance, policies, security, funding and revenue generation. This paper includes a discussion on how to improve procedures and best practices for HIE stakeholders. For individual readers, the sustainability of HIEs may represent a paradigm shift to a more public model of information provision so that accessing and transferring health records is easy and sustainable across the lifetime of providers involved in a patient’s care.
Statewide and regional health information exchanges (HIEs) have become necessary in coordinating health care with intentions for providing a mechanism for care providers to improve quality and safety of patient care by reducing pharmacy and medical errors, redundant or unnecessary testing, and health-related costs. In addition, tools such as alerts, electronic health record (EHR) interoperability, and direct messages theoretically increase patients’ direct access to source information, as well as the timeliness and frequency of communication. With HIE incorporation of public health reporting features, such as cancer registries, states are gaining ground in being able to monitor trends and direct resources to influence change (Jabour et al., 2018; Ruppert et al., 2016) and better serve public advocacy. Increasingly, field activists are recommending inclusion of continuity of care documentation and advanced directives in HIE holdings to help ensure that transitions and handoffs extend communication when patients transition between settings. Fraud detection and efficient use of public health care funds are theorized to be better managed with state-level compliance tools (Office of the National Coordinator for Health Information Technology (ONC), 2018a). Explicit linkage of HIE usage and state fraud detection has been poorly studied as this research strand is highly dependent on case studies (Baranek, 2018) that are more reliant on enterprise HIEs or systems data not explicitly linked to HIE usage (Herland, et al., 2018; van Capelleveen et al., 2016). Perhaps the greatest potential of statewide and regional HIEs is the promise to promote and leverage health care-related research to influence positive patient health outcomes and improve patient-provider feedback and reporting loops.
The extent that statewide and regional HIEs are effective for communicating their benefits to a variety of audiences is less studied. To fill this knowledge gap, a study of statewide or representative HIE websites has been undertaken to better understand the current environment on the transparency of conveyed information on the sustainability of HIE services, governance, reach and funding. The goal of this study is to understand the continuum of transparency issues and how the size and scope of communication efforts are reflecting best practices and field recommendations to identify improvements for stakeholders. For individual readers, the sustainability of HIEs may represent a paradigm shift to a more public model of information provision so that accessing and transferring health records is easy and sustainable across the lifetime of providers involved in a patient’s care.
From its roots in early support from the Agency for Healthcare Research and Quality to later support in the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, statewide and regional HIEs have already navigated a journey to demonstrate their capacity for effectiveness in achieving savings and promoting better health outcomes (Carr, et al., 2016; Sadoughi, et al., 2018). Planning for future capacity involving EHR interoperability is a robust field activity (Blackman-Lees, 2018; Kelly et al., 2020) with impacts on public health and research interests. In addition, Eftekhari et al. (2017) found that for health care providers that adopted a HIE presence, the referral network was improved for general practitioners, presumably with impacts such as improved patient satisfaction, and specialists enjoyed a competitive advantage presumably due to higher visibility and ease in record transmission. This research presented in this paper builds on the work of Esmaeilzadeh (2019b) by adding a sustainability framework to this study of how factors such as policy transparency impacted patient trust and willingness to participate in the disclosure of health information. Discussed in this literature review are sections on how statewide and regional HIEs convey information regarding their services, governance, reach and relationships, and funding and revenue generation to inform the study of how transparency of these various factors inform perceptions of sustainability. Due to the study focus on American HIEs, the literature review largely draws from American literature to inform research themes.
Sustainability of HIE services
Literature on HIE services reflects attention to provider and patient audiences, although there is a scarcity of literature overall, and especially that which reflects a sustainability framework. Regarding provider services, a study of Maryland HIE effectiveness, found a strong positive correlation for HIE portal query usage, and encounter-notification service alerts for reducing hospital readmissions (Edaibat, et al., 2017). Hassol et al.’s (2014) study on the presence of continuity of care documentation in state HIEs helped inform the inclusion of this category in this study’s coding instrumentation. Increasingly, HIE data is being used for predictive purposes of improving health care efficiency, with early results linking prevalence of HIE data to an improved admissions placement (Politi, et al., 2015), which may improve patient health outcomes. In a related use of HIE intersection and predictive services, Dixon et al. (2019) forecasted that HIE-based intervention would send an event notification to VHA providers with the potential outcome of lowering readmission rates.
Services are offered to not only the paying health care providers, but also to individual patients whose participation is crucial to the sustainability of HIEs. Increasingly, statewide and regional HIEs offer the opportunity to serve as a patient-centered data home, particularly in cases where the patient has been treated across providers, settings and networks. Abdelhamid and Sharman (2017) posited that free and easy access to consolidated health records will help sustain the overall HIE model by mitigating concerns over privacy and security. Esmaelzadeh (2019a) agreed with the provision of a model that allows HIEs to reveal their business model risks if patient participants opt out of information exchange. Although the patient-centered data home model offers both push and pull data flow, the overall model of the statewide patient-centered data home may be compromised by patient confusion over data policies, ownership, and security concerns over the wide availability of data. Indeed, recent patent activity (Kendrick et al., 2018), infrastructure proposals and changes (Gagnon & Stephen, 2018), and policy changes on patient-centered issues such as opt in vs opt out (Monica, 2019), indicate the HIE field is still grappling with fundamental sustainability issues.
Sustainability of HIE governance
Governance seems to have a significant impact on HIE development, although similar to the section on HIE services, most literature on HIE governance does not reflect a sustainability perspective. While most research indicates that state laws on authorization, incentives, and opt-in or opt-out consent foster community engagement while government regulations such as mandates for individual providers decreased the likelihood of health care organizational engagement (Mello, et al., 2018; Brown-Podgorski, et al., 2018). Schmit et al.’s (2018) comprehensive study of HIE governance found both benefits and barriers in impacts concerning state laws, with surprising findings: most criteria are unaddressed or ambiguously addressed by state law, few state laws reflect field recommendations, and eight states have no HIE statutes or regulations despite the presence of statewide and regional HIEs. Adjerid et al. (2015) had conflicting results regarding privacy in a study of HIEs, with findings that the complexity of privacy regulations lowered the overall investment and planning for HIEs, but that the regulations ultimately strengthened the development resource itself by generating more robust policies. In addition, these researchers found that state laws addressing consent positively increased the number of operational HIEs. Becker’s (2016) study of boards of participants in the State Health Information Exchange Cooperative Agreement Program was an important indicator of the need to include this category in this study’s coding instrumentation due to arguments furthering the importance of the board in gaining access to critical resources.
HIE reach and relationships
HIEs seemed to have exceeded critical mass with hospital enterprise adoption by 75% of Brown-Podgorski et al.’s (2018) sample; yet, interoperability continues to be a significant barrier to widespread engagement in HIEs, especially in public or community HIEs. In addition, evidence shows that while HIE reach is improving, it is still low in some populations, such as veteran populations (Nguyen, et al., 2017); in some populations and geographies, including vulnerable rural areas (Whitacre, et al., 2017; and in primary care practices (Heyde, 2018), community pharmacies (Sykes, 2019), post-acute, long term care nursing facilities, and home health agencies (Henry, et al., 2018; Kruse et al., 2018; Vest et al., 2019).
The most compelling research supporting HIE investment shows their effectiveness is improving individual and community health outcomes and health care efficiency, although most researchers agree that this research thread is still underdeveloped (Kash et al., 2017; Menachemi, et al., 2018). Yeager at al. (2017) argued that the evaluation process for determining HIE success has shifted. Shy et al. (2016) found that analysis of emergency room return visits was improved with the use of data from a larger HIE; the discussion section in this study considers the potential to improve prediction and reduce return visits. While Yeung’s (2019) study did not link HIE usage to improved county-level health outcomes, it did provide a positive link between EHR usage and health, a necessary first step. Everson and Adler-Milstein (2019) found that simply sharing information between hospitals was associated with greater sharing of patients, attributing this increased sharing to competition factors with the benefit of lowered costs to patient participants. Walker (2018) found that hospital effectiveness was improved by participation in HIEs, particularly in the areas of technical efficiency change and total factor productivity. Jung et al. (2015) found that HIE usage was responsible for generating savings related to the reduction in the need to repeat radiography, ultrasound and mammography imaging services; Eftekhari et al. (2017) had similar results regarding therapeutic medical procedures. Menachemi et al.’s (2018) comprehensive literature review cited studies with fewer duplicated procedures, reduced imaging, lowered costs, and improved patient safety all linked to HIE usage. These studies showed that reduction of repetition impacts patient-consumers as well as hospital sustainability, with promising results.
Vest and Kash (2016) considered the area of relationships with field agencies, particularly in regards to interoperability, to be a primary concern in overall sustainability of statewide and regional HIEs. In particular, Vest and Kash cited equal public incentivization of private or enterprise HIEs instead of greater support for public or community HIEs and vendor-related issues as a significant barrier to interoperability. Indeed, while some field advocates have expressed concern over the decline in the number of HIEs due to potential negative impacts on the amount of data exchange (Adler-Milstein et al., 2013), others argued that this decline may be the result of consolidation (Kansky et al., 2017), which may in fact strengthen the sustainability of public HIEs. In addition, the importance of vendor dominance and its positive links to HIE sustainability is increasingly receiving field attention (Everson & Adler-Milsein, 2016) as related technologies such as EHRs mature.
Sustainability of HIE funding and revenue generation
Despite HIEs having experienced a significant growth pattern serving approximately 92% of the population of the United States as of August 2019 (Cohen, 2019), Adler-Milstein, et al.’s (2013) survey found that HIE administrators have concerns about HIE’s long-term sustainability due to overreliance on public funding. Costs and failure to diversify the pool of health care provider participants are increasingly likely be linked to HIE failure or underperformance as a more diverse pool is more likely to weather interoperability issues; Demirezen, et al. (2016) codified the benefit algorithm for health care providers trying to maximize their HIE investment with findings that costs and services influence HIE network development, which in turn has impacts on participation. Ahmed and Khasawneh’s (2019) sustainability modeling echoed the need to foster wider participation with findings that low provider participation puts a higher cost burden on those that are participating to the extent that sustainability is threatened.
Based on content analysis, a method of qualitative analysis well suited to website artifact analysis (White & Marsh, 2006), themes from the literature review were developed into a coding instrument deployed in a pilot study that explored 10 HIEs websites that would not be used in the main research study, that is, websites for smaller HIEs in states with multiple HIEs. The coding instrument was then refined in an a priori method (Stemler, 2000) to confirm large categorical themes and reject less-relevant categorical themes. Examples of health care policy studies that used a similar methodology include Gurung et al. (2020); Rains & Bosch (2009); and Singh et al. (2020). Examples of health care services and marketing studies include Hebert et al. (2020); Yuksel et al. (2017); and Southwell & Rupert (2016).
Since the purpose of this paper is to codify existing practices in transparency of HIE services, governance, reach and funding, a study of the transparency of this practice will illustrate the growing importance of the topic and inform stakeholders of best practices. Therefore, the research questions of this study were:
One HIE was chosen to represent each of the 50 United States, therefore, the sample consisted of the websites of 50 HIEs. For states with multiple HIEs, if a state-sponsoring agency indicated endorsement of a particular HIE than that HIE was chosen as an official representative for this sample. If an HIE was not legally designated, or sponsored in an endorsed or de-facto manner, then the largest community HIE was chosen for this sample as the most accurate reflection of potential state issues . States were limited to a single representation to achieve parity with states that only offered single representation. States with a single HIE required no elimination criteria. The sponsoring agency website was searched for its transparency regarding the authority of the selected HIE. Each HIE selection was verified as a certified state HIE with the state authorizing agency. All selected HIEs had to meet Vest and Kash’s (2016) definition of a community health information exchange that consolidates information from a broad set of providers as opposed to an enterprise HIE invested within a commercial entity.
The coding scheme was developed through an iterative process: (a) research question development based on literature review themes and significant HIE features; (b) pilot testing using a sample that was not part of the research pool; (c) question adequacy analysis; and (d) question revision based on pilot findings. The final instrument had 28 separately coded questions in four categorical areas: dedicated menus, HIE reach, HIE services, and questions regarding the HIE organizational entity such as the transparency of board members and organizational history.
Once the pilot study and question revision was complete, two researchers deployed the instrument in separate instances during November 2019. The pilot study recommended four service additions for EHR, pathology, analytics and patient vitals, as well as one addition of auditing to the funding\revenue presentation category added to the coding instrument as an a priori approach to qualitative study. Prior to the final revision, a field expert was consulted to determine if the coding instrument had face and construct validity. Researchers coded data in a custom Microsoft Excel spreadsheet. After coding, consensus agreement was used to obtain agreement in the determination of presentation for coded items in opposition, with initial agreement on 85% of the questions.
While every state had a sponsoring agency that presented, at the minimum, a link to the community HIE selected for that state, only eight (16%) sponsoring agencies designated a specific HIE as the state’s HIE; far more common (52%) was representation of the HIE as part of a state cooperative of HIEs, qualified entity by a state authority, or part of a state HIE system, network or project. Six (12%) HIEs are de facto state HIEs as state legislation refers to them explicitly. Four (8%) HIEs are de facto state HIEs as state–sponsored literature refers to them explicitly. An additional 4 (8%) states indicated that the HIE was a pilot or proposal or that strategic planning for statewide HIE was still in development. One HIE was represented as part of a state HIE network and that this particular HIE was the sole effort of the network. One state does not recognize any HIEs except for a defunct clinical HIE; external news sources designate the HIE selected as part of this study as a state-designated HIE.
Table 1 shows the research results of the four categorical research questions and 28 sub-questions of the coding instrument along with analysis; data are presented in terms of their significance.
Table 1 Summary of Findings
NOTE: Registered documents include ADT transactions, continuity of care documentations, discharge summary, and advanced directives. Patient vitals include allergies, past procedures.
The mean score on the link organization was 46.5 (SD .35), with an average of 93% of participants offering links to dedicated audiences. The mean reach category score was 4.2 (SD 2.6), with 26.3% (46/174) of mean scoring in the top quartile (score >6) on this stress scale.
The Strategic Health Information Exchange Collaborative(SHIEC) (https://strategichie.com/) was the mostly commonly mentioned network partner.
Explicit address of the patient experience, including a dedicated set of links for patient audiences, was a significant finding of this study; our results are well aligned with Esmaeilzadeh and Mirzaei’s (2018) study, which had findings that regional HIEs fostered a patient-oriented approach conducive to patient buy-in of the benefits of data exchange; Abdelhamid (2018) had similar findings linking greater patient control to increased adoption rates. One finding of this study is that statewide and regional HIEs are doing a good job of providing information to patient audiences, even information on opting out of the exchange. The high numbers of compliance in this area reflects the impact of health disclosure laws on HIEs as speculated by Adjerid and Padman (2011) and their thesis that states with stronger privacy laws had fewer failed HIEs.
The focus on services was discovered as a need in the pilot study due to explicit declarations of several HIEs that their data rollout, usually referring to interoperability, but with 20% also referring to data reporting, was not yet complete. A 2018 government assessment seems to confirm this deficit with findings that less than 50% of physician practices were electronically exchanging patient health information (ONC, 2018b). This study’s findings that over 36% of studied HIEs offered five (5) or more services aligns with Khuntia et al.’s (2017) that found that HIEs that offered a greater number of services showed greater operational maturity, although often at the expense of financial viability, as case studies show issues with transitioning to a variety of subscription, transaction, and fee models and the need for a more advanced set of services.
While few of the studied HIEs presented transparency on their use of or planning for standards, the 8% that did confirms Parker et al.’s (2016) study finding similarly low levels. No HIE in this study offered explicit mention of fostering a Trustworthy Research Environment or adherence to Secure Cross-Border Exchange (SHiELD) standards as recommended by Conley and Pocs (2018). Those in this study that did address standards referenced the HL7 Fast Healthcare Interoperability Resource in line with new Office of the National Coordinator for Health Information Technology (ONC) and Center for Medicare & Medicaid Services (CMS) guidelines.
The number of HIEs sponsoring medication information is significant especially with field literature noting the potential of HIEs to foster drug regulation and safety improvements (Abbot, 2013; Collins 2016). HIE participation was explicitly cited for gains in information related to chronic medication dosages in Bahous and Shadmi’s (2016) study.
Despite a robust percentage of this study’s HIE presenting registry or other data relevant to research incorporation, field research is mixed concerning generation of published research from poor findings (Parker et al., 2016) to rich use of HIEs in research (Devine et al., 2017). The findings of this study that 40% of studied HIE had an immunizations registry does not align well with a previous 2016 finding that 83.8% of HIEs offered such a service (Shah et al., 2016). Indeed, recent development of HIE definitions related to population use indicated that this aspect of the HIE benefit is still maturing (Buehler et al., 2018), although the use of HIE-provided population data has been shown to be effective for improving outcomes in settings, such as reduced inpatient and emergency visits (Hewner et al., 2018).
All studied sites presented information on their slate of services, as well as information explicitly designed for health care provider customers, confirming Langabeer and Champagne’s (2016) study that found little evidence of a differentiation strategy, as none of the studied sites in this study offered information in a comparative form.
A finding of this study was the low level of state sponsorship of HIEs as a means of insuring sustainability, this finding seems to directly confirm Schmit, et al.’s (2018) findings regarding low levels of statewide control and ambiguous language in related state legislation. A surprising finding in the area of marketing was that a large percentage of HIEs are using competition with other providers to argue for their relevancy. While HIEs are themselves subject to competition, an analysis into this point reveals that those with stronger state sponsorship seem to present a stronger argument as the de-facto state HIE, such as providing extensive lists of committed providers and transparency on network arrangements.
Perhaps due to issues such as proprietary concerns, few HIEs are providing operational information related to their uptime or technology; Campell and Knox (2016) linked this type of evidentiary failure as a significant factor in health technology adoption decision-making.
While results represented a huge continuum of practice, the study offers an initial codification of transparency in the sustainability of state HIEs regarding services, governance, reach and funding. This study’s discussion revealed that study findings are well-linked with field concern on the role of stakeholder trust in the provision of health information. While this study shows that HIE are marketing well to patient and provider audiences, transparency about their operational capacity is not being fostered. Surprisingly, with percentage ranges from the 30s to 50s, HIEs could make a stronger appeal to hospital departments, which may have their own motives for participating in HIEs, as well as their own budgetary line to support HIE membership. This study highlights that self-provided transparency of funding and operational issues is particularly low; thus intervention by sponsoring agencies and interests may be needed to compel HIEs into more robust performance reporting.
For practitioners seeking application to field work, improving website and documentary communications with an eye toward evidentiary support will better support those striving for data-driven decision making. In particular, transparency regarding performance goals and reporting of metrics will serve internal and external communication needs and allow potential sponsors to track progress for potential investment.
To relate results to larger contexts, it will be useful for stakeholders to continue to study HIE transparency and map how related issues influence presentations to audiences. Research invested in state health policy consider HIE sustainability and perceptions of sustainability as a framework for addressing public health data challenges. In addition, study on further state-sponsorship mechanisms for fostering trust may result in work that forges stronger statewide networks.
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Dr. Veronica McGowan serves as the activity director of the Student Success Center at Southwestern Oklahoma State University. She currently serves as an assessment academy mentor with the Higher Learning Commission, as an evaluation reviewer and assessment expert for the Accreditation Council for Business Schools and Programs (ACBSP), and as past chair of a state open educational resources consortium. In her previous position as a tenured computer faculty member, McGowan taught many languages including Java, C++, C#, VB.NET, and scripting languages, and looks forward to teaching data science topics in parallel with a future career in health informatics and information management (HIIM). McGowan was a founding member of the board of education for the Insight School of Oklahoma, a virtual charter school for grades 6-12, located in Midwest City, Oklahoma and recently completed her seven-year service. Educational technology and assessment are main research interests, along with big data and platform interoperability applications in health care. In the past, McGowan served as the Editor-in-chief of the Journal for Computing Teachers and currently serves on editorial and peer review boards for several journals. In 2010, Dr. McGowan graduated from Widener University in Chester, Pennsylvania with a doctorate in academic leadership and adult education.