Data Resource Profile: COVid VAXines Effects on the Aged (COVVAXAGE)
October 18, 2023
Author: Jeannine Sato
New documentary featuring María Aranda, PhD, MSW, explores the impact of Alzheimer’s Disease on Hispanic and Latino population
IMPACT Health Equity Team associate leader María Aranda, PhD, MSW, MPA, LCSW, is featured in, “Our America: Unforgettable,” a new documentary special produced by ABC Owned Television Stations in partnership with ABC News. The program provides insight into what life is like for families facing Alzheimer’s disease and presents the alarming data of the disease through a Hispanic and Latino lens.
According to the Alzheimer’s Association, people from Hispanic and Latino populations are 1.5x more likely than non-Hispanic White people to develop Alzheimer’s and other dementias. In this hour-long special, two families share their experiences on caregiving, and experts in the field, including Dr. Aranda, describe the disparities impacting Hispanic and Latino populations in relation to Alzheimer’s disease. They explore questions about why Alzheimer’s disease manifests differently and more frequently in these communities and describe greater inclusion in research and clinical trials as an essential way of answering these questions and improving care.
Learn more about the program and access the full video here or find it streaming on ABC services. Watch the trailer on YouTube. The episode includes close captioning in both Spanish and English.
IMPACT members to present at two-day workshop exploring serious illness care
IMPACT members, including multiple principal investigator Vince Mor, PhD, Antonia Bennett, PhD, Kathleen Unroe, MD, and Scott Halpern, MD, PhD are participating in a two-day public workshop organized by the National Academies of Sciences, Engineering, and Medicine, November 2-3, 2023 in Washington DC.
The workshop will explore existing evidence, knowledge gaps and opportunities to advance future research for serious illness care. The workshop is titled “Serious Illness Care Research: Exploring Current Knowledge, Emerging Evidence and Future Directions.”
Presentations and discussions will focus on:
- Inclusive research approaches to advance health equity in care
- Safe and effective therapies to address pain and other physical and psychological symptoms
- Quality measurement for serious illness
- The integration of behavioral/mental health care into serious illness care, delivery models that address the patient and family needs
- Opportunities for research coordination and collaboration
Strong IMPACT presence at GSA Annual Conference begins with Long-term Care Cooperative workshop
The IMPACT Collaboratory will have a strong presence at the Gerontological Society of America (GSA) 2023 Annual Scientific Meeting, starting with a workshop by IMPACT multiple principal investigator Vincent Mor, PhD and colleagues.
The workshop entitled “The Long-Term Care Data Cooperative: Leveraging Nursing Home Electronic Health Records for Research,” will be held on the first day of GSA 2023, November 8.
The interactive workshop will enable attendees to learn how the LTC Data Cooperative is generating real-world evidence on treatments and care practices. They will receive access to explore sample data, gain a comprehensive understanding of the core data model, and learn how to request access for research purposes. In addition, interested attendees can apply for one-year "real world data scholars" training grants.
The Long-Term Care Data Cooperative is funded by the National Institute of Aging and aims to improve the quality of care within skilled nursing facilities by compiling the most comprehensive electronic health records data on nursing home residents nationwide.
The full conference will be held November 8-12, 2023, in Tampa, Florida and will include presentations by multiple IMPACT members throughout the conference. Register or learn more about the conference and workshop at gsa2023.org.
New report now available! Voices of the Lived Experience Panel: Health Equity in Dementia Care and Research
The 2022-2023 Lived Experience Panel Report Voices of the Lived Experience Panel: Health Equity in Dementia Care and Research, by IMPACT and LEP members including: María P. Aranda, Talha Ali, Willetha Barnette, Bart Brammer, Katie Brandt, Roberta Cruz, Monica Downer, Shekinah Fashaw-Walters, Darrell Foss, Lupita Gutierrez-Parker, Ladson Hinton, Freddye G. James, Gary Epstein-Lubow, Carolyn Malone, Karen O Moss, Katherine D. Peak, Judith S. Rocha, summarizes the overarching themes that emerged during four meetings of the NIA IMPACT Collaboratory’s Lived Experience Panel, the Health Equity Team, and the Engaging Partners Team. The goal of these discussions was to learn about Panel members’ lived experiences and insights related to health equity in dementia care and research practices.
Panel members shared their own experience living with dementia or mild cognitive impairment while others spoke as care partners or proxies. The report documents a conversational process among panelists. Two major concepts emerged. The first is that people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) and their families have different experiences from one another. The second is that there is a need for a broad and inclusive plan to understand and address weaknesses within the systems of care in the United States, which are often fragmented and lack accountability for health equity.
Announcing the 2023 Real World Data Scholars Program Awardees
The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer’s Disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory (U54AG063546) is pleased to announce the inaugural recipients of the 2023 Real World Data Scholar Program in collaboration with the Long Term Care (LTC) Data Cooperative (U54AG063546-S6).
This new program supports the development of early-career faculty, postdoctoral fellows, and advanced graduate students who are interested in developing their expertise and experience in working with electronic health record (EHR) data in the nursing home setting. The inaugural awardees have the unique opportunity to be among the first users of the LTC Data Cooperative’s EHR data and will conduct projects that characterize the data for future users through validation and analyses.
Recipients of the 2023 Real World Data Scholar Program Awards are:
Jinying Chen, PhD, Section of Preventive Medicine and Epidemiology, Department of Medicine, Boston University Chobanian & Avedisian School of Medicine, Validating Free-text Medication Orders by Leveraging Natural Language Processing
Kenneth Lam, MD, Division of Geriatric Medicine, University of Colorado Anschutz Medical Campus, School of Medicine, Validation of Functional Measures in LTC EHR Data
Lindsay White, PhD, Department of Medical Ethics and Health Policy, University of Pennsylvania Perelman School of Medicine, Determination of Cognitive Status in NH Residents: The Utility of EHR Data
Yongkang Zhang, PhD, MS, Department of Population Health Sciences, Weill Cornell Medical College, Evaluating LTC Data Cooperative EHRs to Study T2D among Nursing Home Residents
Learn more about the awardees.
The 2022-2023 Lived Experience Panel Report, Voices of the Lived Experience Panel: Health Equity in Dementia Care and Research (English/Spanish)
October 3, 2023
Authors: María P. Aranda, PhD, MSW, MPA, LCSW, Talha Ali, Willetha Barnette, Bart Brammer, Katie Brandt, Roberta Cruz, Monica Downer, Shekinah Fashaw-Walters, Darrell Foss, Lupita Gutierrez-Parker, Ladson Hinton, MD, Freddye G. James, Gary Epstein-Lubow, MD, Carolyn Malone, MPH, Karen O. Moss, Katherine D. Peak, MPH, Judith S. Rocha
Description: This report summarizes the overarching themes that emerged during four meetings of the NIA IMPACT Collaboratory’s Lived Experience Panel, the Health Equity Team, and the Engaging Partners Team. The goal of these discussions was to learn about Panel members’ lived experiences and insights related to health equity in dementia care and research practices.
Read the full report here. Read the Spanish translated version here.
Citation: Aranda MP, Ali T, Barnette W, Brammer B, Brandt K, Cruz R, Downer M, Fashaw-Walters S, Foss D, Gutierrez-Parker L, Hinton L, James FG, Epstein-Lubow G, Malone C, Michael C, Moss K, Peak KD, Rocha JS. 2022-2023 Lived Experience Panel Report: Voices of the Lived Experience Panel: Health Equity in Dementia Care and Research. NIA IMPACT Collaboratory; 2023. doi: 10.58234/23680579
Health Equity LEP Report - English Version
Click to view Spanish LEP Report | Health Equity