Transforming Dementia Care Through Pragmatic Clinical Trials Embedded in Learning Healthcare Systems
June 26, 2020
Authors: Leah Tuzzio, MPH, Leah R. Hanson, PhD, David B. Reuben, MD, Rosa R. Baier, MPH, Jerry H. Gurwitz, MD, Elizabeth A. Bayliss, MD, MSPH, Jeff Williamson, MD, James R. Fraser, BA, Samantha J. Sherman, BS, and Eric B. Larson, MD MPH
Core/Team: Health Care Systems Core
Abstract: The current evidence base for testing nonpharmacological interventions for people living with dementia (PLWD) and
their caregivers is limited, especially within care settings such as ambulatory care, assisted living communities, nursing homes, hospitals, and hospices. There has been even less attention to translation of effective interventions for PLWD into delivery of care. Thus, there is an urgent need for researchers to partner with these care settings, especially those that follow a learning healthcare systems (LHSs) model, and vice versa to conduct embedded pragmatic clinical trials (ePCTs). These trials are conducted within sites that offer routine care and are designed to answer important, relevant clinical questions and leverage existing electronic health and administrative data. ePCTs set in LHSs create a unique opportunity for researchers, healthcare providers, and PLWD and their families to work and learn together as potentially effective interventions are studied and stress tested in real-world situations. Healthcare settings that embrace research or quality improvement as part of a culture of continuous learning are ideal settings for ePCTs. In this article, we summarize what we have learned from the National Institutes of Health’s Health Care Systems Research Collaboratory–funded ePCTs, discuss challenges of ePCTs within settings that serve PLWD, and describe the work of the Health Care Systems Core within the National Institute on Aging’s IMbedded Alzheimer’s Disease and Related Dementias Clinical Trials Collaboratory that will occur over the next 5 years. J Am Geriatr Soc 68:S43-S48, 2020.
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Keywords: learning healthcare systems; embedded pragmatic clinical trials; dementia care
About this Special Issue: The Journal of the American Geriatrics Society (JAGS) has published a special issue (Volume 68, S2) focused solely on the National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer’s Disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory and the activities and progress it has made since the September 2019 announcement.
The special issue, published online June 26, includes an introductory article describing the mission and vision of the IMPACT Collaboratory and articles from each of the 10 IMPACT cores and teams describing how they are working to achieve that mission. The introductory article authors are the two IMPACT principal investigators, Susan Mitchell, MD, MPH and Vincent Mor, PhD, as well as the two executive directors, Ellen McCarthy, PhD, MPH, and Jill Harrison, PhD.