Guide to enable health charities to increase recruitment to clinical trials on dementia

Abstract

IntroductionThe Alzheimer Society embarked on a project to improve ways that the 60 provincial and local Societies in Canada can work with local researchers to support recruitment of volunteers to clinical trials and studies. A Guide to assist these offices was produced to design ethical recruitment of research volunteers within their client populations.MethodsConsultations with individuals from provincial and local Societies, as well as researchers and leaders from health-related organizations, were conducted to identify in what ways these organizations are involved in study volunteer recruitment, what is and is not working, and what would be helpful to support future efforts. The Guide prototype used scenarios to illustrate study volunteer recruitment practices as they have been or could be applied in Societies. An implementable version of the Guide was produced with input from multiple internal and external reviewers including subject-matter experts and target users from Societies.ResultsSociety staff reported that benefits of using the Guide were that it served as a catalyst for conversation and reflection and identified the need for a policy. Also, it enabled Society readiness to respond to requests by persons with dementia and their caregivers wishing to participate in research. A majority (94%) of participating Society staff across Canada agreed that they would increase their capacity to support research recruitment.DiscussionCharitable organizations that raise funds for research have a role in promoting the recruitment of persons with dementia and their caregivers into clinical trials and studies. The Guide was produced to facilitate organizational change to both create a positive culture regarding research as well as practical solutions that can help organizations achieve this goal.

The RIC COVID-19 Recruitment & Retention Toolkit: A community-informed resource of recruitment tools and strategies for clinical trial investigators

“…Toolkits consisting of guidelines, strategies, and templates have become popular vehicles for distributing information to healthcare providers and the public alike [17]. The development of toolkits designed to disseminate clinical trial methods and strategies to investigators has also begun to take hold [18,19], including those with the express purpose of increasing involvement of participants and community-based organizations in the research process [20,21]. To our knowledge, however, no published toolkit for clinical research has used community feedback as a core process for informing a toolkit's materials.…”

“…The RIC CAB, a panel of 12 members representing diverse communities across the United States, regularly provides recommendations and guidance to the RIC team to ensure that our strategies and materials reflect the needs, priorities, and values of the wider community. Input from the RIC CAB led to wording changes that made the toolkit more culturally sensitive and participant focused, and was used to develop a summary of 20 strategies to increase inclusivity of populations disproportionately impacted by COVID- 19…”

Stakeholder involvement in dementia research: A qualitative approach with healthy senior citizens and providers of dementia care in Germany

“…In previous studies involving different stakeholders in dementia care, a variety of recruitment strategies were used including analogue and digital methods (Bartlett et al., 2019). Some of these methods were also mentioned by the participants of our study but enrolling an adequate number of participants for dementia studies remains a challenge (Chambers et al., 2017; Leach et al., 2016). A combination of different recruitment strategies and a close collaboration of staff involved can promote active participation of hard to reach groups (Field et al., 2019).…”

A “Patient Preference” Model of Recruitment for Research from Primary-Care-Based Memory Clinics: A Promising New Approach

“…This guide was aimed at helping clinics support research while ensuring the privacy rights of patients and their care partners. These policies and procedures were adapted from a research recruitment guide developed by the Alzheimer Society of Canada to support recruitment efforts from Alzheimer Societies (Chambers, Harris, Lusk, & Benczkowski, 2017) and were informed by discussions with MINT Memory Clinic team members, researchers, patients, and care partners. The guide provided a checklist of considerations that clinics needed to be aware of, such as study applications and approvals (e.g., Research Ethics Boards, Health Canada), an information letter outlining study requirements, risks and benefits of participation, confidentiality and recruitment procedures, potential for perceived conflict of interest, and impact on continuity of care within the clinics.…”