Satya Surbhi, PhD, MS, BPharm; Ian M. Brooks, PhD; Sohul A. Shuvo, MBA, MS; Parya Zareie, MS; Elizabeth A. Tolley, PhD; Ronald Cossman, PhD; Cardella Leak, PhD, MPH; Robert L. Davis, MD, MPH; Altha J. Stewart, MD; and James E. Bailey, MD, MPH
The authors report the experience of one of the first Southern US communities to develop a comprehensive health care data repository for tracking processes and outcomes of care and identifying areas of greatest need.
Objectives:
To describe an innovative health information technology (HIT) model for supporting community-wide health improvement through multiprovider collaboration in a regional population health registry and practice-based research network (PBRN).Study Design: Case study.
Methods: We describe the HIT data structure and governance of the Diabetes Wellness and Prevention Coalition (DWPC) Registry and PBRN based in Memphis, Tennessee. The population served and their characteristics were assessed for all adult patients with at least 1 encounter in a participating health care delivery system from January 1, 2013, to March 31, 2019. Disparities in access and health care utilization were assessed by residential zip code.
Results: The DWPC Registry is a chronic disease and population health data warehouse designed to facilitate chronic disease surveillance and tracking of processes and outcomes of care in medically underserved areas of the mid-South. The Registry primarily focuses on obesity-associated chronic conditions such as diabetes, hypertension, hyperlipidemia, and chronic kidney disease. It combines patient data from 7 regional health systems, which include 6 adult hospitals and more than 50 outpatient practices, covering 462,223 adults with 2,032,425 clinic visits and 602,679 hospitalizations and/or emergency department visits from January 1, 2013, to March 31, 2019. The most prevalent chronic conditions include obesity (37.2%), hypertension (34.4%), overweight (26.4%), hyperlipidemia (18.0%), and type 2 diabetes (14.0%). The Registry provides quarterly practice improvement reports to participating clinics, facilitates surveillance of and outreach to patients with unmet health needs, and supports a pragmatic clinical trial and multiple cohort studies.
Conclusions: Regional registries and PBRNs are powerful tools that can support real-world quality improvement and population health efforts to reduce disparities and improve equity in chronic disease care in medically underserved communities across the United States.
Am J Manag Care. 2020;26(7):In Press
Takeaway PointsThe Diabetes Wellness and Prevention Coalition Registry and Practice-Based Research Network based in Memphis, Tennessee, demonstrate how regionwide population-based chronic disease registries can serve communities and improve equity in chronic disease care and outcomes by:
- assisting clinicians and hospitals in achieving meaningful use and promoting interoperability of electronic health records;
- supporting health systems, community health centers, and independent practices through provision of practice-level quality improvement feedback reports and facilitation of surveillance of and outreach to patients with unmet health needs;
- identifying regional health disparities and areas of high health need; and
- supporting pragmatic research and patient-centered outcomes research for health care innovation and culture change, outcomes improvement, and chronic disease care coordination at lower cost.
Many authors have suggested that health information technology (HIT) has the potential to help mitigate disparities using high-tech features of electronic health records (EHRs), such as patient portals, appointment reminders, automated scheduling, and advanced registry functions, to enhance patient outreach and care coordination.8-12 However, the power and reach of modern EHR systems are often lost or wasted upon vulnerable populations due to discontinuity of care, lack of primary care, and noninteroperability of various EHR systems.13-15 There is a nationally recognized need to address the lack of semantic and syntactic interoperability among EHR systems, but to date, no single proven method addresses all problems. Indeed, health care systems commonly use EHRs for competitive advantage and resist participation in electronic health information sharing initiatives to track and improve health care access, continuity of care, and outcomes across health care systems and provider groups.16-18
Patient-data registries and practice-based research networks (PBRNs) have been proposed to foster collaboration among providers in sharing data for “common good” purposes: namely, regional quality improvement (QI), practice-based QI, and pragmatic clinical research. Other industrialized countries routinely use city-, county-, state-, or regionwide data systems to serve as both registries and PBRNs to support QI and pragmatic clinical research, respectively.19 Yet regional community-wide registries and PBRNs have seldom been implemented on a large scale in the United States. Most previous US efforts have been limited in scope to studies of a single disease, health care delivery system, or provider group10,20-23 rather than the community at large.24,25
This study describes the Diabetes Wellness and Prevention Coalition (DWPC) Registry and PBRN, an innovative US model for combining EHR data from multiple health delivery systems and providers for regional QI and practiced-based research initiatives. The DWPC Registry was created with the aspirational goal of providing a reliable and trusted data backbone to support care management for vulnerable and underserved populations in the mid-South.
METHODS
We performed a descriptive case study of the DWPC Registry and PBRN based in Memphis, Tennessee. We reviewed the DWPC Registry purpose, governance, and registry use in QI, population health, and research activities using internal and publicly available records and key informant interviews of program leaders. We reviewed the HIT data structure, governance, and policies and procedures in the same manner. Our review assessed characteristics for the population participating in the Registry, including all patients with at least 1 encounter in a participating health system from January 1, 2013, to March 31, 2019. Geographic and racial disparities in access to outpatient care and inpatient health care utilization (HCU) were assessed for the year 2018 through geographic information system mapping by zip code of residence.
Setting
The DWPC is a patient, provider, and research partnership initiated in Memphis, Tennessee, in 2009. The DWPC is supported by the University of Tennessee Health Science Center (UTHSC) Center for Health System Improvement in collaboration with the UTHSC Center for Biomedical Informatics (CBMI); the Joint Institute for Computational Science of the University of Tennessee and Oak Ridge National Labs; and 7 regional health systems.26 These regional health systems partner with the DWPC and provide regular data feeds for 6 adult hospitals and more than 50 primary care and specialty clinics within these systems (Figure 1). The majority of the patients served by these health care delivery systems come from West Tennessee, Mississippi, and Arkansas.
Data Collection, Quality Assurance, and Storage
Providers, insurers, and payers participate in the DWPC Registry and PBRN by completing data use agreements with UTHSC and establishing a secure data feed of EHR or billing data with the Registry. The DWPC Registry and PBRN are fully Health Insurance Portability and Accountability Act (HIPAA) compliant and patient privacy is meticulously protected. Patient- and encounter-level data from hospitals and clinics are sent to the Registry database on monthly or quarterly schedules, with each clinic or group of clinics setting a schedule based on resources and capacity. Initially, data feeds are uploaded to an intermediary secure file transfer protocol (SFTP) server at UTHSC (Figure 2). The SFTP server runs an extract/transform/load script to immediately transfer the data to a secure landing zone inside the UTHSC firewall and deletes the memory on the SFTP server. Thus, the SFTP “bastion host” acts as a safe layer between the entity sending files and UTHSC. Once in the landing zone, the data are reviewed through a quality assurance (QA) process that ensures data completeness and uniformity of format using a data quality checklist. Once QA processes have been completed, data are uploaded and stored in a dedicated Oracle database at UTHSC.
Data interoperability issues are inherent to inter-EHR data sharing among independent sites. Even for individual EHR vendors, no 2 EHR instances are exactly alike due to site-specific specifications during installation and subsequent customizations and modifications to meet specific provider needs. Therefore, CBMI technical staff map clinic and hospital EHR feeds to a Common Data Model (CDM) to harmonize them with the larger registry. We are using PCORnet CDM version 5.1 for organization and representation of the data.27 Each patient in the CDM is assigned a unique Registry identifier. Mapping is automated using Talend software.
Following data QA and harmonization, quarterly data quality audits are conducted to identify discrepancies in the Registry data. Specifically, we quantify the accuracy and completeness of data fields within the Oracle database by selecting 50-patient random samples from participating clinics and comparing key variables for harmonized Registry data with the raw data received from data providers. The full HIT infrastructure, data transfer, and storage process is detailed in Figure 2.
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