Participatory Research

This resource examines how the U.K.-based Join Dementia Research registry strongly bolstered recruitment efforts.

In this British study, 33 researchers working on dementia trials in care homes completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection from people with dementia (as opposed to only collecting data from caregivers or family member proxies). Five main benefits from obtaining the direct perspective of people with dementia in research were identified: (1) improving the delivery of person-centered care, (2) hearing the...

The Patient-Centered Outcomes Research Institute (PCORI) created this repository of more than 150 tools and resources for use with patient-centered, stakeholder-engaged research. Repository items are developed by recipients of PCORI research grants, and the Institute makes them publicly available to encourage the use of these engagement practices and methodologies within the broader healthcare research community. The database can be searched by keywords or by criteria in the following categories...

This online tool helps patient groups and clinical research sponsors identify high-value opportunities for patient engagement.

This NIA-produced planning guide for investigators, study coordinators, recruitment communications staff, and others involved in clinical research outlines strategies for improving community-based research participation.

This review examined 20 studies to identify successful community-engaged interventions that included healthcare providers as a key strategy in addressing barriers to clinical trial enrollment of underrepresented patients. Of the studies, 9 addressed cancer clinical trials and 11 addressed trials related to chronic medical conditions, including diabetes, hypertension management, and chronic kidney disease. The key strategies employed were categorized according to their presumed impact on barriers...

In-depth, semi-structured, telephone interviews were conducted with 31 research investigators experienced with minority populations, to explore their perspectives regarding how their own racial and ethnic background influenced their ability to recruit minorities. The analysis addressed the benefits and potential risks of racial concordance ("race-matching") in research recruitment (i.e., it is not a "magic pill"), and the importance investigators themselves placed on "being really connected" and...

Recommendations and guidelines to increase the participation of minorities in health-related research typically pertain to research in clinical or laboratory contexts. This article summarizes community-engaged outreach efforts that can be translated into usable strategies for health education research teams seeking to diversify the pool of research participants. The article provides an overview of the various components of a research endeavor that may influence minority participation in health...

This paper discusses a variety of methods that were successful in exceeding target recruitment and retention goals in a randomized clinical trial of hearing protector use among farm operators. Recruitment and retention strategies were: based on a philosophy of mutually beneficial engagement in the research process, culturally appropriate, tailored to the unique needs of partnering agencies, and developed and refined in a cyclical and iterative process. These approaches may result in enhanced...

In this review, researchers summarize some of the available methods to improve Alzheimer’s disease research recruitment, the available literature to support or refute these strategies, and experiences at the Alzheimer’s Disease Research Centers. This article also addresses the application of community-based participatory research principles and the use of participant registries to enhance research enrollment and increase diversity of research samples. Grill JD, Galvin JE. Facilitating Alzheimer...

This toolkit, developed by the National Center for Advancing Translational Sciences at the National Institutes of Health, provides patient groups with the tools needed to advance medical research. Tools are developed for and by patient groups in concert with their academic, government, industry, and advocacy partners, and are designed to ensure patients are engaged as essential partners from beginning to end of the research and development process. Resources cover topics such as the principles...

The aim of this paper was to explore the impact research participant involvement had within the PREVENT and the European Prevention of Alzheimer's Dementia (EPAD) projects. The authors reported the experiences of involving research participants as collaborators in prospective cohort studies exploring early changes in the brain as pathways toward and risks for dementia. They used minutes and feedback from members of the panel and steering committee to understand the experience and impact on the...

Brains for Dementia Research is a planned brain donation project that involved lay input in its conception, design, and implementation. Lay representatives served on the management and tissue banking committees, spoke at recruitment and team events, and reviewed all public- and participant-facing communications. This involvement has aided recruitment and retention through a strong partnership between professional staff and the community. Ensuring good communication between professionals and lay...

The aim of this paper is to describe a person-centered and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study. The involvement of these experts was influenced by each individual's needs and desires, which changed over the course of the study. The approach to clinical research design and involvement had a significant impact on successful...

Engaging patients in registry development can increase registries' long-term success and help retain patients who enroll in them. This study involved two semi-structured focus groups with 18 people with dementia and their family members to get their perspectives on registry participation experiences, barriers and facilitators to participation, and potential avenues for improvement of registry processes. The main themes identified included altruistic motives regarding registry participation and...

Strengthening Translational Research in Diverse Enrollment (STRIDE) is a collaborative project focused on developing innovative approaches to enhancing informed consent procedures, with a goal of improving research literacy among underserved populations.

Researchers presented two innovative, testable methods for resolving the challenge of increasing older African Americans' participation in research studies. A total of 62 older African Americans were randomized to treatment and control conditions of a reminiscence intervention. Sensitivity to an African-American cultural form of respect for elders (recognition of worth and dignity) and intersections between the lived experience of the researcher and participants helped dispel this population's...

This study used Community Partnered Participatory Research (CPPR) to address low participation of racial/ethnic minorities in medical research and the lack of trust between underrepresented communities and researchers. Residents of a South Los Angeles neighborhood were exposed to research recruitment strategies: referral by word-of-mouth, community agencies, direct marketing, and study participants. Study completion rates varied by recruitment method: referral by community agencies (88.7%)...

This study sought to develop and test a community-developed, faith-based intervention and evaluate its potential to increase the number of older African Americans in clinical research. The authors worked with six churches to enroll at least 210 people. Those at the intervention group received three educational sessions on the role of clinical trials in addressing health disparity topics, and those in the comparison group completed surveys at the same time. All participants received ongoing...

The engagement of lay stakeholders, such as community advisory boards (CABs), has the potential to increase recruitment and retention of underrepresented groups by providing a structure for gathering feedback on research plans and materials. However, many CABs recruit prominent stakeholders who are connected to or comfortable with research and academia and thus may not accurately represent all underrepresented populations. Researchers developed a partnership between a university nursing school...

In this study, researchers explored the use of a community-based oral health initiative to assist in recruitment of racial and ethnic minorities to focus groups for older adults. The process involved planning a recruitment strategy, engaging the individuals involved in its implementation (senior center attendees, program staff, and directors), executing the recruitment plan, and reflecting on the process of implementation. Targets for recruitment were met, an outcome attributed to the...

This editorial in Nature discusses how thanking participants in clinical trials is a simple but effective strategy for making them feel like partners in research.

This article describes how clinical trials participants are using social media to communicate with each other, which can disrupt the usual flow of information.

The Community Action Council at the Boston University Alzheimer's Disease Center (BU ADC) is comprised of leaders from the older adult African-American community. Members are invited to present new research studies, discuss recruitment strategies, report research findings, and provide education or feedback on specific initiatives. Standing members of the council include leaders in the greater Boston African-American community, registry participants, and collaborative partners from Boston...

This research article provides an overview of a community-based participatory research project that involved a partnership between Indiana University and the Senior Companions Program of Catholic Charities Indianapolis. Sixty senior companions participated in focus groups to describe how the Senior Companions Program impacts their quality of life as well as that of their clients, who were predominately African Americans. The authors attribute the success of their research project to the...