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.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3106368/

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.

Read the full article at this link.

The 2021-2022 Lived Experience Panel Report: Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia

August 18, 2022

Authors: Emily Largent, PhD, JD, RN, Jason Karlawish, MD Steve Joffe, MD, MPH, Gary Epstein-Lubow, MD

Description: This report documents the insights gained from two meetings between members of IMPACT’s Ethics and Regulation Core and the Lived Experience Panel, featuring conversations regarding the ethical challenges related to conducting embedded pragmatic clinical trials among people living with dementia and their care partners using waivers of informed consent.

Read the full report here.

Citation: Largent E, Karlawish J, Joffe S, Epstein-Lubow G. The 2021-2022 Lived Experience Panel Report: Ethical Challenges in Conducting Research Using a Waiver of Informed Consent with People Living with Dementia. NIA IMPACT Collaboratory; 2022. doi: doi.org/10.58234/92591162
Click to view LEP Report | Ethics & Regulation

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.

Read the full report here.

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

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.

Clin-Star and Clin-Star Database

The Clin-STAR (Clinician–Scientists Transdisciplinary Aging Research Coordinating Center) Initiative aims to connect and support the development of clinician-scientists across a variety of disciplines in order to expand aging research that focuses on improving the health, independence, and well-being of older adults. To facilitate these goals, Clin-STAR provides funding, mentorship, and resources for clinician-scientists at all careers levels across a variety of disciplines. They also host the Clin-STAR database, a discovery tool that enables research collaboration and networking among members.