The COVID-19 pandemic highlighted the need for having more timely information on infection prevalence, vaccination status, and therapeutic administration.
The COVID-19 pandemic highlighted the need for having more timely information on infection prevalence, vaccination status, and therapeutic administration. Challenges in making this happen shined a spotlight on the data gap in nursing homes due to the absence of federal support for the adoption of interoperable health technology and the absence of health information exchange (HIE) requirements that would permit such information to be shared with other providers, patients, and public health officials[i]. Additionally, these same shortcomings create barriers to timely research of the effectiveness of various clinical interventions and the impacts of long-COVID syndromes.
To address the need for timely information and research, the National Institute on Aging (NIA)[1] funded the Long-TermCare (LTC) Data Cooperative[2], a collaboration among providers and stakeholders in academia, government, and the private sector. The LTC Data Cooperative is currently inviting(1) long-term care provider organizations to participate and (2) researchers to propose effectiveness studies that can use data in the LTC Data Cooperative.
The LTC Data Cooperative assembles residents’ electronic health records (EHRs) from the major specialty vendors. It is the largest integrated database of detailed, normalized, electronic health record data from nursing homes in the United States, supported by the NIA through a supplemental grant (NIA 3U54AG063546-S6) to the NIA IMPACT Collaboratory[3]. A brief video description of this initiative discussed by the Chief Medical Officer of the cooperative, David Gifford, MD, MPH can be found here[4].
This initiative is governed by the American Health Care Association (AHCA)[5]. Together with Brown University School of Public Health[6], a pioneer of research studies using integrated data on residents that have helped the long-term care community, and Exponent, Inc.[7], an interdisciplinary and scientific consulting company, the AHCA-led effort is assembling the largest and most comprehensive health records database from geographically and structurally diverse nursing homes and residents. Currently, the following EHR companies participate in the LTC Data Cooperative:
Mission of the LTC Data Cooperative
The mission of the LTC Data Cooperative is to improve the quality of care within skilled nursing facilities by compiling the most comprehensive data on nursing home residents nationwide – and to translate these data into information that is accessible and actionable.
Over time, the multi-year effort will serve three broad functions:
· Assist providers with health care operations.
· Support public health monitoring for medical conditions and infections, including COVID-19.
· Enable two types of research, observational studies of the long-term care population and clinical research studies.
Specifically for research, federally-funded researchers may request access to EHR data linked with Medicare claims via the NIA Data LINKAGE Program[8].
Benefits for Participating SNFs
The cost for participation is FREE for all nursing homes that agree to have their specified EHR data available to be directly shared by the EHR vendor with the LTC Data Collaborative. Providers do not need to be an AHCA member to participate. As a benefit, all participating providers will have the opportunity to:
1. Receive routine reports to assist with care coordination and improve operations and clinical systems of care.
2. Voluntarily participate in research with federally-funded academic partners.
As of December 15, 2023, there were 151 registered organizations representing nearly 3,000 unique facilities enrolled.
Opportunities for Researchers
Federally-funded researchers wanting to conduct effectiveness studies or pragmatic trials can enroll their partnering sites in this Cooperative to more easily access the clinical data needed to close the evidence gaps in long-term care. As of December15, 2023, data have been integrated from over 900 of these nursing homes nationwide with 796,133 unique residents, and includes 37 million medication prescriptions, 903 million medication administrations, 1.2 million immunization records, and 983 million vital sign observations. The LTC Data Cooperative is described further in the following paper (Dore et al., The long-term care data cooperative: The next generation of data integration 2022[9])
The LTC Data Cooperative team holds quarterly town hall meetings that bring together providers enrolled in the LTC Data Cooperative and researchers. Current and prospective researchers will have the opportunity to learn about funded projects, receive updates about the data cooperative's progress, and listen to provider feedback. Please email us to be added to these events!
Upcoming Sessions for researchers listed below:
· Tuesday, February 13, 2024 1:00PM EST
· Tuesday, May 14, 2024 1:00PM EST
· Tuesday, August 13, 2024 1:00PM EST
· Tuesday, November 19, 2024 1:00PM EST
More information for researchers can be found here[10].
Readers that have general questions about the LTC Data Cooperative can contact the helpdesk at LTCDataCooperative@ahca.org.
[i] 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act funded hospitals and physicians to adopt interoperable EMRs but excluded nursing homes and other post-acute provider settings.
[1] National Institute on Aging (NIA)
[2]Long-TermCare (LTC) Data Cooperative
[4]https://youtu.be/JPPMrNfuIZs
[5]American Health Care Association (AHCA)
[6]Brown University School of Public Health
[9]Dore et al., The long-term care data cooperative: The next generation of data integration 2022
[10]https://www.ltcdatacooperative.org/Pages/Researchers.aspx
