At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America’s diverse population. Learn more at this link.
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The Patient-Centered Outcomes Research Institute (PCORI)
PCORI is a leader in driving US clinical research to becomes more patient-centered. They are committed to ensuring that patients and other healthcare stakeholders are involved throughout the research process, offering awards to promote engagement in research, dissemination and implementation projects, methodology research, and the development of research infrastructure.
Introduction to the Science of Recruitment and Retention Among Ethnically Diverse Populations
September 1, 2010
This paper is an introduction to a special issue of The Gerontologist journal. It provides an overview of important theoretical and conceptual frameworks that seek to address the shortcomings of previous models of recruiting diverse populations and reviews strategies for reaching out to these diverse groups.
Abstract
Recruitment and retention of research participants is evolving with the changing demographics of the American population, in particular its growing diversity. The cultural-historical background and sociopolitical conditions of each diverse group poses unique challenges in developing successful recruitment and retention methods and strategies. This critical collection of articles demonstrates important theoretical and conceptual frameworks that seek to address the shortcomings of previous models of recruiting diverse populations. Understanding the key components of cultural distinctions, such as values and beliefs, community cohesion, and collective history, has proven to be instrumental in reaching out to these diverse groups. This important strategy has allowed researchers to overcome the barriers that have been fostered in the past and has built the trust necessary to move forward into an inclusive approach to aging research. Not to be overlooked, an important factor to achieving success in recruitment and retention of diverse populations is having access to resources that allow for ongoing connection with research participants.
Beyond diversity to inclusion: recruitment and retention of diverse groups in Alzheimer research
July 1, 2010
This paper provides a discussion on using an inclusive approach to recruitment and retention of diverse groups in Alzheimer research by framing the issues of diversity and inclusion, outlining specific inclusive strategies for researchers, providing ideas on a retooling process to prepare researchers to use inclusive approaches.
Abstract
This article provides a discussion on using an inclusive approach to recruitment and retention of diverse groups in Alzheimer research. The discussion begins by framing the issues of diversity and inclusion and reviewing some of the conceptual and theoretical frameworks that can help researchers develop an inclusive approach to research. Next, some specific inclusive strategies that the researchers can use to recruit and retain diverse samples are discussed. Last, ideas on a retooling process that can prepare researchers to use inclusive approaches are discussed. Ultimately, an inclusive approach to recruitment and retention goes beyond diversity and instead, emphasizes shared interest and representation by researchers and participants in the research process.
LTCfocus
LTCfocus.org provides data on nursing home care in the US. Their goal is to allow researchers to trace relationships between state policies, local market forces, and the quality of long-term care, enabling policymakers to craft state and local guidelines that promote high-quality, cost-effective, equitable care for older Americans.
The 2021-2022 Lived Experience Panel Report: Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research
August 18, 2022
Authors: Antonia V. Bennett, PhD, Laura C. Hanson, MD, MPH, Gary Epstein-Lubow, MD, Sheryl Zimmerman, PhD
Description: Summarizes the discussions with the Lived Experience Panel and members from the Patient and Caregiver Relevant Outcomes Core about research study outcomes that are important to people living with dementia and their care partners.
Citation: Bennett AV, Hanson LC, Epstein-Lubow G, Zimmerman SI. The 2021-2022 Lived Experience Panel Report: Priorities for Person and Caregiver Relevant Outcomes in Dementia Intervention Research. NIA IMPACT Collaboratory; 2022. doi: doi.org/10.58234/82222234
Click to view LEP Report | Patient & Caregiver Relevant Outcomes
Mor named to CBO Panel of Health Advisers
NIA IMPACT multiple principal investigator Vincent Mor, PhD, has been named to the Congressional Budget Office (CBO) Panel of Health Advisers.
The panel is a group of widely recognized experts in health policy and the health care sector who provide feedback and recommendations to the CBO. Panelists usually serve three-year terms, and meet in person once a year as well as advise the CBO in-between meetings for tasks such as developing analytic questions and preparation of studies.
Dr. Mor joins 21 other experts on the panel. The full list of panelists can be found at this link.
CASI (Center for Aging and Serious Illness CASI) | Improving outcomes in aging and serious illness
The Center for Aging and Serious Illness (CASI) at Massachusetts General Hospital aims to improve the well-being of older adults and enhance the lived experience of those with advanced illnesses. By creating a pipeline of strong investigators, conducting applied clinical studies, and supporting a robust research community, CASI aims to engage aging populations in research, illuminate how to provide effective care for serious illnesses, and augment well-being for older adults and their care partners.