Barriers to identifying residents with dementia for embedded pragmatic trials: A call to action

TY - JOUR

T1 - Barriers to identifying residents with dementia for embedded pragmatic trials

T2 - A call to action

AU - McCreedy, Ellen

AU - Gilmore-Bykovskyi, Andrea

AU - Dorr, David A.

AU - Lima, Julie

AU - McCarthy, Ellen P.

AU - Meyers, David J.

AU - Platt, Richard

AU - Vydiswaran, V. G.Vinod

AU - Bynum, Julie P.W.

N1 - Funding Information: Dr. Andrea Gilmore-Bykovskyi's work was supported National Institute on Aging (NIA) Paul B. Beeson Award NIA K76AG060005. This work was supported by the National Institute on Aging (NIA) of the National Institutes of Health under Award Number U54AG063546, which funds the NIA Imbedded Pragmatic Alzheimer's Disease and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). The continued lack of progress in translating efficacious, evidence-based interventions into real-world settings has been an area of increasing focus over the last 10 years. This implementation gap is also found in the translation of nonpharmacological interventions for people living with Alzheimer's disease or other dementias (ADRD) and their care partners.1 While efficacious interventions exist, few have demonstrated effectiveness or sustainability under real-world testing. In response, the National Institute on Aging (NIA) has made a significant investment in bridging the implementation gap by funding the IMbedded Pragmatic Alzheimer's disease and AD-Related Dementias Clinical Trials (IMPACT) Collaboratory.2 The mission of the IMPACT Collaboratory is to build national capacity to conduct pragmatic clinical trials of nonpharmacological interventions for people with ADRD and their care partners. One key feature of embedded pragmatic trials is to enroll all participants who are likely to be recommended to receive the intervention when it becomes part of usual care. To enroll participants in large pragmatic trials, we first need to be able to accurately identify the target population. Adequate screening optimally relies on use of available data sources as reliance on clinician or researcher screening is frequently infeasible at scale. In October 2020, the NIA IMPACT Collaboratory Technical Data Core sponsored a virtual workshop entitled “Future Priorities for Identifying People with Dementia from Digital Health Data for Embedded Pragmatic Clinical Trials.”3 Over 50 research and policy experts convened to share best-practice, validated algorithms for identifying people with ADRD and their limitations. The goals of the workshop were to assess the current state of the field, clarify directions for future work, and prioritize immediate and long-term goals. In this call to action, we summarize three major barriers to identifying people with ADRD that need to be addressed to equitably and accurately target eligibility and enrollment for future pragmatic trials (Table 1). Abbreviations: ADRD, Alzheimer's disease and related dementia; EMR, electronic medical record; GUID, Global Unique Identifier; NIH, National Institutes of Health; PLWD, people living with dementia. Funding Information: Dr. Andrea Gilmore‐Bykovskyi's work was supported National Institute on Aging (NIA) Paul B. Beeson Award NIA K76AG060005. This work was supported by the National Institute on Aging (NIA) of the National Institutes of Health under Award Number U54AG063546, which funds the NIA Imbedded Pragmatic Alzheimer's Disease and AD‐Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory).

PY - 2022/2

Y1 - 2022/2

UR - http://www.scopus.com/inward/record.url?scp=85118360234&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85118360234&partnerID=8YFLogxK

U2 - 10.1111/jgs.17539

DO - 10.1111/jgs.17539

M3 - Comment/debate

C2 - 34727369

AN - SCOPUS:85118360234

SN - 0002-8614

VL - 70

SP - 638

EP - 641

JO - Journal of the American Geriatrics Society

JF - Journal of the American Geriatrics Society

IS - 2

ER -