Exploring the impact of primary care utilization and health information exchange upon treatment patterns and clinical outcomes of glioblastoma patients.

PURPOSE: There is limited literature describing care coordination for patients with glioblastoma (GBM). We aimed to investigate the impact of primary care and electronic health information exchange (HIE) between neurosurgeons, oncologists, and primary care providers (PCP) on GBM treatment patterns, postoperative outcomes, and survival. METHODS: We identified adult GBM patients undergoing primary resection at our institution (2007-2020). HIE was defined as shared electronic medical information between PCPs, oncologists, and neurosurgeons. Multivariate logistic regression analyses were used to determine the effect of PCPs and HIE upon initiation and completion of adjuvant therapy. Kaplan-Meier and multivariate Cox regression models were used to evaluate overall survival (OS). RESULTS: Among 374 patients (mean age ± SD: 57.7 ± 13.5, 39.0% female), 81.0% had a PCP and 62.4% had electronic HIE. In multivariate analyses, having a PCP was associated with initiation (OR: 7.9, P < 0.001) and completion (OR: 4.4, P < 0.001) of 6 weeks of concomitant chemoradiation, as well as initiation (OR: 4.0, P < 0.001) and completion (OR: 3.0, P = 0.007) of 6 cycles of maintenance temozolomide thereafter. Having a PCP (median OS [95%CI]: 14.6[13.1-16.1] vs. 10.8[8.2-13.3] months, P = 0.005) and HIE (15.40[12.82-17.98] vs. 13.80[12.51-15.09] months, P = 0.029) were associated with improved OS relative to counterparts in Kaplan-Meier analysis and in multivariate Cox regression analysis (hazard ratio [HR] = 0.7, [95% CI] 0.5-1.0, P = 0.048). In multivariate analyses, chemoradiation (HR = 0.34, [95% CI] 0.2-0.7, P = 0.002) and maintenance temozolomide (HR = 0.5, 95%CI 0.3-0.8, P = 0.002) were associated with improved OS relative to counterparts. CONCLUSION: Effective care coordination between neurosurgeons, oncologists, and PCPs may offer a modifiable avenue to improve GBM outcomes.

Clinicians' use of Health Information Exchange technologies for medication reconciliation in the U.S. Department of Veterans Affairs: a qualitative analysis.

BACKGROUND: Medication reconciliation is essential for optimizing medication use. In part to promote effective medication reconciliation, the Department of Veterans Affairs (VA) invested substantial resources in health information exchange (HIE) technologies. The objectives of this qualitative study were to characterize VA clinicians' use of HIE tools for medication reconciliation in their clinical practice and to identify facilitators and barriers. METHODS: We recruited inpatient and outpatient prescribers (physicians, nurse practitioners, physician assistants) and pharmacists at four geographically distinct VA medical centers for observations and interviews. Participants were observed as they interacted with HIE or medication reconciliation tools during routine work. Participants were interviewed about clinical decision-making pertaining to medication reconciliation and use of HIE tools, and about barriers and facilitators to use of the tools. Qualitative data were analyzed via inductive and deductive approaches using a priori codes. RESULTS: A total of 63 clinicians participated. Over half (58%) were female, and the mean duration of VA clinical experience was 7 (range 0-32) years. Underlying motivators for clinicians seeking data external to their VA medical center were having new patients, current patients receiving care from an external institution, and clinicians' concerns about possible medication discrepancies among institutions. Facilitators for using HIE software were clinicians' familiarity with the HIE software, clinicians' belief that medication information would be available within HIE, and their confidence in the ability to find HIE medication-related data of interest quickly. Six overarching barriers to HIE software use for medication coordination included visual clutter and information overload within the HIE display; challenges with HIE interface navigation; lack of integration between HIE and other electronic health record interfaces, necessitating multiple logins and application switching; concerns with the dependability of HIE medication information; unfamiliarity with HIE tools; and a lack of HIE data from non-VA facilities. CONCLUSIONS: This study is believed to be the first to qualitatively characterize clinicians' HIE use with respect to medication reconciliation. Results inform recommendations to optimize HIE use for medication management activities. We expect that healthcare organizations and software vendors will be able to apply the findings to develop more effective and usable HIE information displays.

Continuity of medication information transfer and continuous medication supply during hospital-to-home transitions - nationwide surveys in hospital and community pharmacies after implementing new legal requirements in Germany.

BACKGROUND: While successful information transfer and seamless medication supply are fundamental to medication safety during hospital-to-home transitions, disruptions are frequently reported. In Germany, new legal requirements came into force in 2017, strengthening medication lists and discharge summaries as preferred means of information transfer. In addition to previous regulations - such as dispensing medication at discharge by hospital pharmacies - hospital physicians were now allowed to issue discharge prescriptions to be supplied by community pharmacies. The aim of this survey study was to gain first nationwide insights into how these requirements are implemented and how they impact the continuity of medication information transfer and continuous medication supply. METHODS: Two nationwide self-administered online surveys of all hospital and community pharmacies across Germany were developed and conducted from April 17th to June 30th, 2023. RESULTS: Overall, 31.0% (n = 111) of all German hospital pharmacies and 4.5% (n = 811) of all community pharmacies participated. The majority of those hospital pharmacies reported that patients who were discharged were typically provided with discharge summaries (89.2%), medication lists (59.5%) and if needed, discharge prescriptions (67.6%) and/or required medication (67.6%). About every second community pharmacy (49.0%) indicated that up to half of the recently discharged patients who came to their pharmacy typically presented medication lists. 34.0% of the community pharmacies stated that they typically received a discharge summary from recently discharged patients at least once per week. About three in four community pharmacies (73.3%) indicated that most discharge prescriptions were dispensed in time. However, one-third (31.0%) estimated that half and more of the patients experienced gaps in medication supply. Community pharmacies reported challenges with the legal requirements - such as patients´ poor comprehensibility of medication lists, medication discrepancies, unmet formal requirements of discharge prescriptions, and poor accessibility of hospital staff in case of queries. In comparison, hospital pharmacies named technical issues, time/personnel resources, and deficits in patient knowledge of medication as difficulties. CONCLUSION: According to the pharmacies´ perceptions, it can be assumed that discontinuation in medication information transfer and lack of medication supply still occur today during hospital-to-home transitions, despite the new legal requirements. Further research is necessary to supplement these results by the perspectives of other healthcare professionals and patients in order to identify efficient strategies.

Real-world data to support post-market safety and performance of embolization coils: evidence generation from a medical device manufacturer and data institute partnership.

BACKGROUND: Recognizing the limitations of pre-market clinical data, regulatory authorities have embraced total product lifecycle management with post-market surveillance (PMS) data to assess medical device safety and performance. One method of proactive PMS involves the analysis of real-world data (RWD) through retrospective review of electronic health records (EHR). Because EHRs are patient-centered and focused on providing tools that clinicians use to determine care rather than collecting information on individual medical products, the process of transforming RWD into real-world evidence (RWE) can be laborious, particularly for medical devices with broad clinical use and extended clinical follow-up. This study describes a method to extract RWD from EHR to generate RWE on the safety and performance of embolization coils. METHODS: Through a partnership between a non-profit data institute and a medical device manufacturer, information on implantable embolization coils' use was extracted, linked, and analyzed from clinical data housed in an electronic data warehouse from the state of Indiana's largest health system. To evaluate the performance and safety of the embolization coils, technical success and safety were defined as per the Society of Interventional Radiology guidelines. A multi-prong strategy including electronic and manual review of unstructured (clinical chart notes) and structured data (International Classification of Disease codes), was developed to identify patients with relevant devices and extract data related to the endpoints. RESULTS: A total of 323 patients were identified as treated using Cook Medical Tornado, Nester, or MReye embolization coils between 1 January 2014 and 31 December 2018. Available clinical follow-up for these patients was 1127 ± 719 days. Indications for use, adverse events, and procedural success rates were identified via automated extraction of structured data along with review of available unstructured data. The overall technical success rate was 96.7%, and the safety events rate was 5.3% with 18 major adverse events in 17 patients. The calculated technical success and safety rates met pre-established performance goals (≥ 85% for technical success and ≤ 12% for safety), highlighting the relevance of this surveillance method. CONCLUSIONS: Generating RWE from RWD requires careful planning and execution. The process described herein provided valuable longitudinal data for PMS of real-world device safety and performance. This cost-effective approach can be translated to other medical devices and similar RWD database systems.

Preparing community pharmacy teams for health information exchange (HIE).

BACKGROUND: Health information exchanges (HIEs) facilitate health care professionals' electronic sharing of patient information across different organizations. When community pharmacists have access to HIE, they can further contribute to improved patient outcomes. However, several implementation challenges are noted, which impede sustained pharmacist access to HIE. To our knowledge, no bidirectional HIE interface design and pharmacy team-informed implementation process has been documented. In response, our research team designed and developed an HIE interface prototype for use specifically by community pharmacy teams to access local HIE data through their pharmacy dispensing software. OBJECTIVES: To 1) identify barriers, facilitators, and recommendations for using HIE data in community pharmacies and 2) create a curated list of resources addressing identified implementation needs to aid future implementation of a fully functional, bidirectional HIE interface by community pharmacy teams. METHODS: Pharmacists, pharmacy technicians, and patients from three pharmacy sites within the Community Pharmacy Enhanced Services Network of Indiana participated in individual semi-structured interviews. Interview questions were mapped to select constructs across all domains of the Consolidated Framework for Implementation Research. Interview transcripts were deductively coded. A subset of participants participated in Evidence-Based Quality Improvement sessions to iteratively update planned resource items needed to support future HIE implementation. RESULTS: We interviewed 23 total participants: 8 pharmacists, 8 pharmacy technicians, and 7 patients. Five facilitators, four barriers, and two recommendations were identified. These were further characterized into four key implementation needs: instruction on how to use HIE; guidance on workflow and team roles; resources that are patient-facing; and resources that are provider-facing, resulting in 16 planned implementation resources. CONCLUSION: Our study provides the first-of-its-kind list of pharmacy team-informed resources to facilitate sustainability and scalability of HIE implementation in community pharmacies.

Collaborating for COVID-19: Hospital Health Information Exchange and Public Health Partnership.

Background: The coronavirus disease (COVID-19) pandemic highlighted the need for effective communication and information sharing among health care organizations and public health systems (PHSs). Health information exchange (HIE) plays a vital role in improving quality control and efficiency in hospital settings, particularly in underserved areas. Objective: This study aimed to investigate the variation of HIE availability among hospitals based on their collaboration with the PHS and affiliation with Accountable Care Organizations (ACOs) in 2020, as well as variation by community social determinants of health. Methods: The primary data set used for this study comprised the linked data set of the 2020 American Hospital Association (AHA) Annual Survey and the AHA Information Technology Supplement. The measures used included the hospital's participation in HIE networks, availability of data exchange, and HIE measures during the COVID-19 pandemic, including whether hospitals effectively received electronically transmitted information from outside providers for COVID-19 treatment. Results: The sample size of hospitals ranged from 1,316 to 1,436, depending on different outcomes related to HIE questions. Of the hospitals surveyed, ∼67% reported public health collaboration and ACO affiliation, while 7% reported neither. Hospitals without public health collaboration or ACO affiliation were more likely to be located in underserved areas. Compared with hospitals without public health collaboration or ACO affiliation, hospitals with both were 9% more likely to report the availability of electronically transmitted clinical information from outside providers and to participate in local and national HIE networks. Furthermore, these hospitals were 30% (marginal effect [ME] = 0.30, p < 0.001) more likely to report effective receipt of information from outside providers for COVID-19 treatment and 12% (ME = 0.12, p = 0.02) more likely to always/often receive clinical information for COVID-19 treatment electronically. Conclusions: Hospital collaboration with the PHS and ACO affiliation are associated with greater availability of electronic health data, particularly during the COVID-19 pandemic.

The Impact of Delivery Reform on Health Information Exchange with Behavioral Health Providers: Results from a National Representative Survey of Ambulatory Physicians.

Health information exchange (HIE) is an effective way to coordinate care, but HIE between health and behavioral health providers is limited. Recent delivery reform models, including the Accountable Care Organization (ACO) and Patient Centered Medical Home (PCMH) prioritize interprofessional collaboration, but little is known about their impact on behavioral health HIE. This study explores whether delivery reform participation affects behavioral health HIE among ambulatory health providers using pooled 2015-2019 data from the National Electronic Health Record Survey, a nationally representative survey of ambulatory physicians' technology use (n = 8,703). The independent variable in this analysis was provider participation in ACO, PCMH, Hybrid ACO-PCMH, or standard care. The dependent variable was HIE with behavioral health providers. Chi square analysis estimated unweighted rates of behavioral health HIE across reform models. Logistic regression estimated the impact of delivery reform participation on rates of behavioral health HIE. Unweighted estimates indicated that Hybrid ACO-PCMH providers had the highest rates of HIE (n = 330, 33%). In the fully adjust model, rates of HIE were higher among ACO (AOR = 2.66, p < .01), PCMH (AOR = 4.73, p < .001) and Hybrid ACO-PCMH participants (AOR = 5.55, p < .001) compared to standard care, but they did not significantly vary between delivery models. Physicians infrequently engage in HIE with behavioral health providers. Compared to standard care, higher rates of HIE were found across all models of delivery reform. More work is needed to identify common elements of delivery reform models that are most effective in supporting this behavior.

Systems for electronic documentation and sharing of advance care planning preferences: a scoping review.

Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework (https://osf.io/xnrg3). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches (n = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information (n = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients.

The Impact of Community Health Information Exchange Usage on Time to Reutilization of Hospital Services.

PURPOSE: Few studies have determined whether clinician usage of a community health information exchange (HIE) directly improves patient care transitions. We hypothesized that lookup in the HIE by primary care physicians of patients recently released from the hospital would increase the time until hospital reuse. METHODS: We identified a retrospective cohort of 8,216 hospital inpatients aged over 18 years that were discharged from January 1, 2021 through November 30, 2021 using the Paso del Norte Health Information Exchange, in El Paso County, Texas. All patients had a primary care physician visit within 30 days after hospital discharge, and we identified patients that were looked up in the HIE close to that visit. Of the cohort, 2,627 were rehospitalized and 3,809 visited an emergency department (ED) during the follow-up window. The remaining 1,780 patients were controls. We conducted survival analysis, censoring at the second ED or inpatient visit or end of the study window (January 31, 2022). The model was adjusted by ethnicity, gender, insurance, and age. RESULTS: Lookup in the HIE was significantly associated with reducing the likelihood of visiting the ED by 53% and being rehospitalized by 61%. Lookup in the HIE was associated with an increased median time to use of the ED after inpatient discharge from 99 to 238 patient days. Ethnicity, insurance, gender, and age were also significant predictors of hospital reuse. CONCLUSIONS: Increased utilization of community HIEs by primary care physicians on behalf of their recently discharged patients may dramatically increase the time until inpatient or ED reuse.

Health information exchange network under collaboration, cooperation, and competition: A game-theoretic approach.

Health Information Exchange (HIE) network allows securely accessing and sharing healthcare-related information among healthcare providers (HCPs) and payers. HIE services are provided by a non-profit/profit organizations under several subscription plans options. A few studies have addressed the sustainability of the HIE network such that HIE providers, HCPs, and payers remain profitable in the long term. However, none of these studies addressed the coexistence of multiple HIE providers in the network. Such coexistence may have a huge impact on the behavior of healthcare systems in terms of adoption rate and HIE pricing strategies. In addition, in spite of all the effort to maintain cooperation between HIE providers, there is still a chance of competition among them in the market. Possible competition among service providers leads to many concerns about the HIE network sustainability and behavior. In this study, a game-theoretic approach to model the HIE market is proposed. Game-theory is used to simulate the behavior of the three different HIE network agents in the HIE market: HIE providers, HCPs, and payers. Pricing strategies and adoption decisions are optimized using a Linear Programming (LP) mathematical model. Results show that the relation between HIEs in the market is crucial to HCP/Payer adoption decision specially to small HCPs. A small change in the discount rate proposed by a competitive HIE provider will highly affect the decision of HCP/payers to join the HIE network. Finally, competition opened the opportunity for more HCPs to join the network due to reduced pricing. Furthermore, collaborative HIEs provided better performance compared to cooperative in terms of profit and HCP adoption rate by sharing their overall costs and revenues.

Intersection of policy and Immunization Information Systems (IIS).

BACKGROUND: Immunization information systems (IIS) are confidential, population-based computerized databases that record vaccination doses administered to persons residing within a given geopolitical area. We sought to highlight the evolution of IIS policy over the last two decades, as IIS play a pivotal role in achieving equitable and high vaccine uptake. METHODS: Legal epidemiological research methods were used to assess relevant IIS statutes and administrative codes across all 50 states, the District of Columbia, Philadelphia, and New York City. Where relevant, laws were cross-checked or supplemented with state and local health department resources. Comparisons to previous legal studies enabled evaluation of trends in IIS laws over time. RESULTS: The compilation of current laws provides an updated overview of the diverse interstate and intrastate policies within the US that govern the capabilities and implementation of IIS. The findings of this study show the progress that has been made in the past decade in improving policies that enable IIS to be utilized across the life-course. Conversely, gaps in IIS data collection, limited interoperability with local and national health information systems, and inconsistent access to view or utilize IIS records due to existing policies, continue to limit the full potential of IIS. CONCLUSIONS: In the United States (US), IIS are implemented and managed at the state and local level, creating variability in IIS policies and implementation. Findings from this study serve as a comprehensive benchmark of current IIS laws that may aid policy stakeholders who are exploring amendments to jurisdictional IIS laws.

The complexities of communication at hospital discharge of older patients: a qualitative study of healthcare professionals' views.

BACKGROUND: Hospital discharge of older patients is a high-risk situation in terms of patient safety. Due to the fragmentation of the healthcare system, communication and coordination between stakeholders are required at discharge. The aim of this study was to explore communication in general and medication information transfer in particular at hospital discharge of older patients from the perspective of healthcare professionals (HCPs) across different organisations within the healthcare system. METHODS: We conducted a qualitative study using focus group and individual or group interviews with HCPs (physicians, nurses and pharmacists) across different healthcare organisations in Sweden. Data were collected from September to October 2021. A semi-structured interview guide including questions on current medication communication practices, possible improvements and feedback on suggestions for alternative processes was used. The data were analysed thematically, guided by the systematic text condensation method. RESULTS: In total, four focus group and three semi-structured interviews were conducted with 23 HCPs. Three main themes were identified: 1) Support systems that help and hinder describes the use of support systems in the discharge process to compensate for the fragmentation of the healthcare system and the impact of these systems on HCPs' communication; 2) Communication between two separate worlds depicts the difficulties in communication experienced by HCPs in different healthcare organisations and how they cope with them; and 3) The large number of medically complex patients disrupts the communication reveals how the highly pressurised healthcare system impacts on HCPs' communication at hospital discharge. CONCLUSIONS: Communication at hospital discharge is hindered by the fragmented, highly pressurised healthcare system. HCPs are at risk of moral distress when coping with communication difficulties. Improved communication methods at hospital discharge are needed for the benefit of both patients and HCPs.

Trust and Health Information Exchanges: Qualitative Analysis of the Intent to Share Personal Health Information.

BACKGROUND: Digital health has the potential to improve the quality of care, reduce health care costs, and increase patient satisfaction. Patient acceptance and consent are a prerequisite for effective sharing of personal health information (PHI) through health information exchanges (HIEs). Patients need to form and retain trust in the system(s) they use to leverage the full potential of digital health. Germany is at the forefront of approving digital treatment options with cost coverage through statutory health insurance. However, the German population has a high level of technology skepticism and a low level of trust, providing a good basis to illuminate various facets of eHealth trust formation. OBJECTIVE: In a German setting, we aimed to answer the question, How does an individual form a behavioral intent to share PHI with an HIE platform? We discussed trust and informed consent through (1) synthesizing the main influence factor models into a complex model of trust in HIE, (2) providing initial validation of influence factors based on a qualitative study with patient interviews, and (3) developing a model of trust formation for digital health apps. METHODS: We developed a complex model of the formation of trust and the intent to share PHI. We provided initial validation of the influence factors through 20 qualitative, semistructured interviews in the German health care setting and used a deductive coding approach to analyze the data. RESULTS: We found that German patients show a positive intent to share their PHI with HIEs under certain conditions. These include (perceived) information security and a noncommercial organization as the recipient of the PHI. Technology experience, age, policy and regulation, and a disposition to trust play an important role in an individual's privacy concern, which, combined with social influence, affects trust formation on a cognitive and emotional level. We found a high level of cognitive trust in health care and noncommercial research institutions but distrust in commercial entities. We further found that in-person interactions with physicians increase trust in digital health apps and PHI sharing. Patients' emotional trust depends on disposition and social influences. To form their intent to share, patients undergo a privacy calculus. Hereby, the individual's benefit (eg, convenience), benefits for the individual's own health, and the benefits for public welfare often outweigh the perceived risks of sharing PHI. CONCLUSIONS: With the higher demand for timely PHI, HIE providers will need to clearly communicate the benefits of their solutions and their information security measures to health care providers (physicians, nursing and administrative staff) and patients and include them as key partners to increase trust. Offering easy access and educational measures as well as the option for specific consent may increase patients' trust and their intention to share PHI.

Asymmetric Interoperability as a Strategy Among Provider Group Health Information Exchange: Directional Analysis.

BACKGROUND: High levels of seamless, bidirectional health information exchange continue to be broadly limited among provider groups despite the vast array of benefits that interoperability entails for patient care and the many persistent efforts across the health care ecosystem directed at advancing interoperability. As provider groups seek to act in their strategic best interests, they are often interoperable and exchange information in certain directions but not others, leading to the formation of asymmetries. OBJECTIVE: We aimed to examine the correlation at the provider group level between the distinct directions of interoperability with regard to sending health information and receiving health information, to describe how this correlation varies across provider group types and provider group sizes, and to analyze the symmetries and asymmetries that arise in the exchange of patient health information across the health care ecosystem as a result. METHODS: We used data from the Centers for Medicare & Medicaid Services (CMS), which included interoperability performance information for 2033 provider groups within the Quality Payment Program Merit-based Incentive Payment System and maintained distinct performance measures for sending health information and receiving health information. In addition to compiling descriptive statistics, we also conducted a cluster analysis to identify differences among provider groups-particularly with respect to symmetric versus asymmetric interoperability. RESULTS: We found that the examined directions of interoperability-sending health information and receiving health information-have relatively low bivariate correlation (0.4147) with a significant number of observations exhibiting asymmetric interoperability (42.5%). Primary care providers are generally more likely to exchange information asymmetrically than specialty providers, being more inclined to receive health information than to send health information. Finally, we found that larger provider groups are significantly less likely to be bidirectionally interoperable than smaller groups, although both are asymmetrically interoperable at similar rates. CONCLUSIONS: The adoption of interoperability by provider groups is more nuanced than traditionally considered and should not be seen as a binary determination (ie, to be interoperable or not). Asymmetric interoperability-and its pervasive presence among provider groups-reiterates how the manner in which provider groups exchange patient health information is a strategic choice and may pose similar implications and potential harms as the practice of information blocking has in the past. Differences in the operational paradigms among provider groups of varying types and sizes may explain their varying extents of health information exchange for sending and receiving health information. There continues to remain substantial room for improvement on the path to achieving a fully interoperable health care ecosystem, and future policy efforts directed at advancing interoperability should consider the practice of being asymmetrically interoperable among provider groups.

Initiatives, Concepts, and Implementation Practices of the Findable, Accessible, Interoperable, and Reusable Data Principles in Health Data Stewardship: Scoping Review.

BACKGROUND: Thorough data stewardship is a key enabler of comprehensive health research. Processes such as data collection, storage, access, sharing, and analytics require researchers to follow elaborate data management strategies properly and consistently. Studies have shown that findable, accessible, interoperable, and reusable (FAIR) data leads to improved data sharing in different scientific domains. OBJECTIVE: This scoping review identifies and discusses concepts, approaches, implementation experiences, and lessons learned in FAIR initiatives in health research data. METHODS: The Arksey and O'Malley stage-based methodological framework for scoping reviews was applied. PubMed, Web of Science, and Google Scholar were searched to access relevant publications. Articles written in English, published between 2014 and 2020, and addressing FAIR concepts or practices in the health domain were included. The 3 data sources were deduplicated using a reference management software. In total, 2 independent authors reviewed the eligibility of each article based on defined inclusion and exclusion criteria. A charting tool was used to extract information from the full-text papers. The results were reported using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. RESULTS: A total of 2.18% (34/1561) of the screened articles were included in the final review. The authors reported FAIRification approaches, which include interpolation, inclusion of comprehensive data dictionaries, repository design, semantic interoperability, ontologies, data quality, linked data, and requirement gathering for FAIRification tools. Challenges and mitigation strategies associated with FAIRification, such as high setup costs, data politics, technical and administrative issues, privacy concerns, and difficulties encountered in sharing health data despite its sensitive nature were also reported. We found various workflows, tools, and infrastructures designed by different groups worldwide to facilitate the FAIRification of health research data. We also uncovered a wide range of problems and questions that researchers are trying to address by using the different workflows, tools, and infrastructures. Although the concept of FAIR data stewardship in the health research domain is relatively new, almost all continents have been reached by at least one network trying to achieve health data FAIRness. Documented outcomes of FAIRification efforts include peer-reviewed publications, improved data sharing, facilitated data reuse, return on investment, and new treatments. Successful FAIRification of data has informed the management and prognosis of various diseases such as cancer, cardiovascular diseases, and neurological diseases. Efforts to FAIRify data on a wider variety of diseases have been ongoing since the COVID-19 pandemic. CONCLUSIONS: This work summarises projects, tools, and workflows for the FAIRification of health research data. The comprehensive review shows that implementing the FAIR concept in health data stewardship carries the promise of improved research data management and transparency in the era of big data and open research publishing. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/22505.

Characterizing suicidal ideation, suicidal behaviors, and service utilization among unhoused individuals using a health information exchange.

INTRODUCTION: Unhoused individuals have high rates of suicidal ideation (SI) and suicidal behaviors (SB), but few have studied the relative timing of homelessness and SI/SB. Our study examines the potential to use state-wide electronic health record data from Rhode Island's health information exchange (HIE) to identify temporal relationships, service utilization, and associations of SI/SB among unhoused individuals. METHODS: We use timestamped HIE data for 5368 unhoused patients to analyze service utilization and the relative timing of homelessness versus SI/SB onset. Multivariable models identified associations of SI/SB, hospitalization, and repeat acute care utilization within 30 days from clinical features representing 10,000+ diagnoses captured within the HIE. RESULTS: The onset of SI typically precedes homelessness onset, while the onset of SB typically follows. Weekly rates of suicide-related service utilization increased over 25 times the baseline rate during the week before and after homelessness onset. Over 50% of encounters involving SI/SB result in hospitalization. Of those engaging in acute care for suicide-related reasons, we found high rates of repeat acute care encounters. CONCLUSION: HIEs are a particularly valuable resource for understudied populations. Our study demonstrates how longitudinal, multi-institutional data from an HIE can be used to characterize temporal associations, service utilization, and clinical associations of SI and behaviors among a vulnerable population at scale. Increasing access to services that address co-occurring SI/SB, mental health, and substance use is needed.

Leveraging PEPFAR-Supported Health Information Systems for COVID-19 Pandemic Response.

Since 2003, the US President's Emergency Plan for AIDS Relief (PEPFAR) has supported implementation and maintenance of health information systems for HIV/AIDS and related diseases, such as tuberculosis, in numerous countries. As the COVID-19 pandemic emerged, several countries conducted rapid assessments and enhanced existing PEPFAR-funded HIV and national health information systems to support COVID-19 surveillance data collection, analysis, visualization, and reporting needs. We describe efforts at the US Centers for Disease Control and Prevention (CDC) headquarters in Atlanta, Georgia, USA, and CDC country offices that enhanced existing health information systems in support COVID-19 pandemic response. We describe CDC activities in Haiti as an illustration of efforts in PEPFAR countries. We also describe how investments used to establish and maintain standards-based health information systems in resource-constrained settings can have positive effects on health systems beyond their original scope.

Effect of Health Information Exchange Plus a Care Transitions Intervention on Post-Hospital Outcomes Among VA Primary Care Patients: a Randomized Clinical Trial.

BACKGROUND: Health information exchange (HIE) notifications when patients experience cross-system acute care encounters offer an opportunity to provide timely transitions interventions to improve care across systems. OBJECTIVE: To compare HIE notification followed by a post-hospital care transitions intervention (CTI) with HIE notification alone. DESIGN: Cluster-randomized controlled trial with group assignment by primary care team. PATIENTS: Veterans 65 or older who received primary care at 2 VA facilities who consented to HIE and had a non-VA hospital admission or emergency department visit between 2016 and 2019. INTERVENTIONS: For all subjects, real-time HIE notification of the non-VA acute care encounter was sent to the VA primary care provider. Subjects assigned to HIE plus CTI received home visits and telephone calls from a VA social worker for 30 days after arrival home, focused on patient activation, medication and condition knowledge, patient-centered record-keeping, and follow-up. MEASURES: Primary outcome: 90-day hospital admission or readmission. SECONDARY OUTCOMES: emergency department visits, timely VA primary care team telephone and in-person follow-up, patients' understanding of their condition(s) and medication(s) using the Care Transitions Measure, and high-risk medication discrepancies. KEY RESULTS: A total of 347 non-VA acute care encounters were included and assigned: 159 to HIE plus CTI and 188 to HIE alone. Veterans were 76.9 years old on average, 98.5% male, 67.8% White, 17.1% Black, and 15.1% other (including Hispanic). There was no difference in 90-day hospital admission or readmission between the HIE-plus-CTI and HIE-alone groups (25.8% vs. 20.2%, respectively; risk diff 5.6%; 95% CI - 3.3 to 14.5%, p = .25). There was also no difference in secondary outcomes. CONCLUSIONS: A care transitions intervention did not improve outcomes for veterans after a non-VA acute care encounter, as compared with HIE notification alone. Additional research is warranted to identify transitions services across systems that are implementable and could improve outcomes.

Acceptability of Health Information Exchange and Patient Portal Use in Depression Care Among Underrepresented Patients.

BACKGROUND: Depression is often untreated or undertreated, particularly among underrepresented groups, such as racial and ethnic minorities, and individuals of lower socioeconomic status. Electronic health information exchange (HIE) is a recommended practice to improve care coordination and encourage patient engagement in services, but it remains underutilized in depression care. Understanding factors affecting acceptance and adoption of this technology among underrepresented patient populations is needed to increase dissemination of HIE within mental health treatment. OBJECTIVE: The present study aims to identify patient barriers and facilitators towards the acceptance of HIE within the context of depression treatment and to examine how HIE impacts depression-related care coordination and patient activation. DESIGN: Semi-structured qualitative interviews were conducted with 27 patients. PARTICIPANTS: Respondents were English-speaking adults (> 18) receiving depression treatment within a large, safety-net primary care clinic. APPROACH: A grounded theory approach was used to code and analyze data for emergent themes. Thematic analysis was guided by the Unified Theory of Acceptance and Use of Technology, a leading informatics theory used to predict end-user adoption of technology. KEY RESULTS: Respondents reported that HIE made depression care more convenient, transparent, and trustworthy. Though respondents desired greater access to their health records, stigma surrounding depression inhibited acceptance of electronic communication and information sharing. Confusing electronic interface also diminished perceived benefits of HIE. CONCLUSION(S): Respondents desire greater transparency in their depression care. While HIE was perceived to improve the overall quality of depression care, stigma associated with mental illness undermined more robust adoption of this technology among underserved populations.

Health information exchange through a Device-to-Device protocol supporting lossless encoding and decoding.

Despite the availability of secure electronic data transfers, most medical information is still stored on paper, and it is usually shared by mail, fax or the patients themselves. Today's technologies aim to the challenge of sharing healthcare information, since exchanging inaccurate data leads to inefficiency and errors. Currently, there exist numerous techniques for exchanging data, which however require continuous internet connection, thus lacking generic applicability in healthcare, in the cases where no internet connection is available. In this paper, a new Device-to-Device (D2D) protocol is proposed, specifying a series of Bluetooth messages regarding the healthcare information that is being exchanged in short-range distances, between a healthcare-practitioner and a citizen. This information refers to structured and unstructured data, which can be directly exchanged through a globally used communication protocol, extending it for the permission of exchanging HL7 FHIR Bluetooth structured messages. Moreover, for high volume data, the D2D protocol can support lossless compression and decompression, improving its overall efficiency. The protocol is firstly evaluated through exchanging sample data in a real-world scenario, whereas an overall comparison of exchanging multiple sized data either using lossless compression or not is being provided. According to the evaluation results, the D2D protocol specification was strictly followed, successfully providing the ability to exchange healthcare-related data, with Bluetooth being considered the most suitable technology for current needs. For small-sized data, the D2D protocol performs better without the provided lossless compression mechanism, whereas in the case of large-sized data lossless compression is considered as the only option.