September 16, 2024
Topics
NIA Outreach Pro: Building Better AD/ADRD Clinical Trial Outreach Materials
The National Institute on Aging developed OutreachPro to help researchers create customized outreach materials for clinical trials on Alzheimer’s and related dementias. Choose from a suite of audience-specific images, headlines and text, available in multiple languages and tested for maximum recruiting impact. Then add your own content, apply your own logo, and brand colors. Watch the video to the right for an overview of how to use OutreachPro.
Unroe receives $15.5 million NIH award to develop a national network to include nursing home residents in clinical trials
Congratulations to IMPACT Associate Pilot Core Leader, Kathleen Unroe, MD, MHA, MS, of IU School of Medicine and Regenstrief Institute and team on recent 5-year award from the National Institutes of Health to develop NEXT STEPs (Nursing Home EXplanatory Clinical Trials: Supporting Transformation by Enhancing Partnerships), an innovative national nursing home clinical trials network.
Researcher-clinicians from the IU School of Medicine and Regenstrief will lead the initiative to increase nursing home resident participation in clinical trials by removing barriers to participation and creating a more inclusive approach.
Dr. Unroe is the principal investigator of the initiative which includes research sites in nine states and collaborative work with multiple institutions including:
- Regenstrief Institute, Inc.
- Brown University
- University of Maryland, Baltimore
- University of Utah
- Hebrew Rehabilitation Center
- The Regents of University of California, Los Angeles (UCLA)
- University of Colorado Denver in the amount
- Institute for Healthcare Improvement
- Rhode Island Hospital
- University of North Carolina at Chapel Hill
- Duke University
- New York University
Learn more about this groundbreaking new initiative at https://www.regenstrief.org/article/award-funds-network-to-include-nursing-home-residents-in-clinical-trials/
Bynum and team publish findings from research into geographic disparities in Alzheimer’s disease diagnosis
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
Mor selected to the Congressional Budget Office’s 2024 Panel of Health Advisers
Vincent Mor, PhD, NIA IMPACT Multiple Principal has been selected to join the Congressional Budget Office’s 2024 Panel of Health Advisers.
Members of the panel come from a variety of backgrounds and specialties to represent a broad array of perspectives on research and real-world developments in healthcare delivery and financing.
Invited members will participate in an annual meeting to discuss issues in their areas of expertise and to advise analysis. Additionally, members will be engaged throughout the year to share perspectives on analytical questions that arise during the preparation of studies and the development of cost estimates.
Read the full announcement here.
New IMPACT Lived Experience Panel Report | Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia
Introducing the 2023-2024 Lived Experience Panel Report: Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia by IMPACT and LEP members including Joshua Niznik, Antonia Bennett, Natalie C. Ernecoff, Sheryl Zimmerman, Kathryn Wessell, Laura Hanson, Gary Epstein-Lubow, Carolyn Malone, Willetha Barnette, Bart Brammer, Katie Brandt, Roberta Cruz, Monica Downer, Darrell Foss, LuPita Gutierrez-Parker, Freddye G. James, Judith S. Rocha, Anthony Wagner.
The report describes the insights and lessons learned from a series of 3 meetings between the IMPACT Lived Experience Panel and members of the Patient and Caregiver Relevant Outcomes Core. The topic of discussion was goal-concordant care as it occurs in the real world and as it is measured in research. Panel members discussed their experiences talking about their goals of care with their healthcare providers and how thinking about their goals could help them make healthcare decisions. Discussions unveiled some surprising discordance between panel members’ experiences and researcher expectations, which resulted in a series of challenges and recommendations for future efforts.
Read the full report to learn more!
The 2023-2024 Lived Experience Panel Report: Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia
July 10, 2024
Authors: Joshua Niznik, PharmD, PhD, Antonia Bennett, PhD, Natalie C. Ernecoff, PhD, MPH, Sheryl Zimmerman, PhD, Kathryn Wessell, MPH, Laura Hanson, MD, Gary Epstein-Lubow, MD, MPH, Carolyn Malone, MPH, Willetha Barnette, Bart Brammer, Katie Brandt, Roberta Cruz, Monica Downer, Darrell Foss, LuPita Gutierrez-Parker, Freddye G. James, Judith S. Rocha, Anthony Wagner
Description: This report describes the major lessons learned from a series of discussions between people living with dementia, care partners, researchers, healthcare providers, and other community members about ways to improve the quality of healthcare for people living with dementia. The main topic of these discussions was ‘goal-concordant care’ which means ensuring that healthcare treatments and decisions are in line with what matters most to patients and families. Panel members were asked to discuss their experiences talking about goals with their healthcare providers and how thinking about their goals could help with making healthcare decisions. Some key takeaway points are:
- Decision-making for people living with dementia is more often driven by needs and priorities, than by healthcare “goals.”
- Decision-making for people living with dementia involves many people, which is not often reflected in research.
- It can be difficult for people living with dementia and care partners to feel actively involved in healthcare decision-making.
Further study is needed to identify strategies to ensure that people living with dementia and care partners are actively involved in decision-making and in identifying the best ways to measure whether the needs and priorities of people living with dementia and care partners are being met.
Read the full report here.
Citation: Niznik J, Bennett A, Ernecoff NC, Zimmerman S, Wessell K, Hanson L, Epstein-Lubow G, Malone C, Barnette W, Brammer B, Brandt K, Cruz R, Downer M, Foss D, Gutierrez-Parker L, James FG, Rocha JS, Wagner A. 2023-2024 Lived Experience Panel Report: Perspectives on Evaluating and Measuring Goal-Concordant Care for People Living with Dementia. NIA IMPACT Collaboratory; 2024. doi: 10.58234/35429703
Click to view LEP Report | PCRO Goal-Concordant Care
