Technical Data

Home Time as a Patient-Centered Outcome in Pragmatic Trials: Promise, Pitfalls, and the Path Forward

Posted on by Josee Meehan

January 2026 – Grand Rounds 62, Drs. Hanson, Kim, Ankuda, and Van Houtven discuss home time as a patient-centered outcome in pragmatic trials.

Webinar Slides

Laura Hanson, MD, MPH

Professor, Division of Geriatric Medicine and Director, UNC Palliative Care Program, University of North Carolina School of Medicine

 

Claire Ankuda, MD, MPH

Associate Professor, Icahn School of Medicine at Mount Sinai

Dae Hyun Kim, MD, MPH, ScD

Associate Director of Marcus Institute for Aging Research, Associate Professor of Medicine, Harvard Medical School

Courtney Van Houtven, PhD

Professor, Population Health Sciences, Duke University School of Medicine and Duke-Margolis Institute for Health Policy

Learning Objectives

  • Understand the concept of home time as a patient‑centered, system‑relevant outcome measure and how it is operationalized across different clinical contexts.
  • Recognize the limitations, measurement challenges, and equity concerns associated with using home time as an outcome or performance metric in pragmatic clinical trials.
  • Reflect on emerging evidence and future directions for developing more person‑centered home time measures that better capture quality of life for older adults and caregivers.

NORC Dementia DataHub

Posted on by Erin Luers

Button to access NORC Dementia DataHub

The Dementia DataHub (R01 AG075730), created by NORC at the University of Chicago, provides interactive dashboards and maps to view dementia diagnoses among Medicare beneficiaries, with results available at the national, state, and county levels. NORC Dementia DataHub uses the term “dementia” to refer broadly to Alzheimer’s disease dementia and Alzheimer’s disease related dementias (AD/ADRD) and other diagnoses that are sometimes used to indicate these conditions.

 

Bynum and team publish findings from research into geographic disparities in Alzheimer’s disease diagnosis

Posted on by Erin Luers

Congratulations to Julie Bynum, MD, MPH from the University of Michigan‘s Institute for Healthcare Policy and Innovation and the team for their newest research findings reflecting the disparities in Alzheimer’s disease diagnosis based on geographic location!

Highlights from the research:

  • The rate of new Alzheimer’s disease and related dementias (ADRD) case identification varies geographically across the United States.
  • Variation in case identification is greatest in Black, Hispanic, and young-old groups.
  • Intensity of diagnosis (i.e., case identification) unrelated to population risk differs across place.
  • Likelihood of receiving an ADRD diagnosis varies 2-fold based on place of residence.

Read the full article to learn more about their insightful findings: https://doi.org/10.1002/alz.14092

Graphic with headshot of Dr. Julie Bynum from the shoulders up, next to the words "Grand Rounds & Podcast March 2024"

Diagnosed Dementia in Medicare: Benchmarking for Study Planning and Equity

Posted on by Mia

March 2024 – In Grand Rounds 45, Dr. Bynum shares the pros and cons of using healthcare-generated data, such as Medicare Fee-for-Service and Medicare Advantage, to identify people living with Alzheimer's disease and related dementias (ADRD), as well as the use of population benchmarks in study planning and integrating health equity.

 

Speaker

Dr. Julie BynumJulie Bynum, MD, MPH

Margaret Terpenning Collegiate Professor of Internal Medicine

Division of Geriatric & Palliative Medicine

University of Michigan


 
Download Webinar Slides

Learning Objectives

  • Identify strengths & challenges when using Medicare data for participant identification
  • Understand characteristics of diagnosed dementia cases across place
  • Consider value of using population benchmarks for planning and equity

 

Podcast

 

Podcast Transcript: Download the transcript here.

IMPACT Collaboratory announces two new resources to aid in the design of ePCTs

Posted on by Jeannine Sato

Two IMPACT Collaboratory cores have developed new tools to assist in the design of embedded pragmatic trials (ePCTs) for people living with dementia.

The Design and Statistics Core has developed statistical tools and novel methodology to aid in the design and analyses of ePCTs for people living with dementia. These methods, manuscripts, statistical programs, and interactive web applications are now available to help researchers calculate sample sizes, intra-cluster correlations, and power for stepped wedge and cluster randomized trials.

The content can be accessed in IMPACT’s new Statistical Tools web page. The tools will be updated as new statistical resources become available.

The Technical Data Core has generated prevalence estimates of Alzheimer’s disease and related dementias (ADRD) for the Medicare population by geographic regions (e.g., state, hospital referral regions) and settings of care (hospitals, emergency departments, skilled nursing facilities). These data include the total number of Medicare beneficiaries, total number of beneficiaries with ADRD, and key demographic characteristics (age, sex, race, dual eligibility). Data from 2020 and 2021 are available for Medicare Advantage and Traditional Medicare populations. The prevalence data are available with consultation to help investigators planning ePCTs for people living with dementia in these settings of care.

Learn more about United States Dementia Prevalence Estimates among Medicare Beneficiaries. Interested investigators may request a consultation with an expert.

 

 

CAPRA Data Brief | health care use patterns among older adults with dementia

Posted on by Jeannine Sato

IMPACT’s Cameron Gettel, MD and Julie Bynum, MD, MPH are among the authors of the CAPRA Data Brief on health care use patterns among older adults with dementia. The brief was developed by the Center to Accelerate Population Research on Alzheimer’s (CAPRA) at the University of Michigan.

Authors demonstrated the use of Medicare claims to examine healthcare use patterns among older adults with ADRD using datasets provided by the Impact Collaboratory. The brief cites the increase in emergency care, hospitalization, and skilled nursing facility admissions for Medicare recipients and an increased need for planning and care for people with Alzheimer’s Disease and Related Dementias (ADRD) in the U.S.

Read the brief here.

Is Learning Worth the Trouble? — Improving Health Care System Participation in Embedded Research

Posted on by Beth C

Is Learning Worth the Trouble? — Improving Health Care System Participation in Embedded Research

July 1, 2021

A paper about the importance of embedded pragmatic clinical trials (ePCTs) in generating real-world evidence without the limitations associated with observational studies or the time, expense, and lack of generalizability that are barriers to conducting conventional randomized clinical trials. The authors’ experience working in the coordinating center of the National Institutes of Health (NIH) Health Care Systems Research Collaboratory has demonstrated the feasibility of conducting innovative multicenter ePCTs for various conditions. Read the full article here.