“If it helps someone, then I want to do it”: Perspectives of persons living with dementia on research registry participation

Abstract

Registries are an important platform to which persons with dementia and other cognitive impairments can contribute to research studies. Registries also provide an opportunity for patients to stay informed about current studies. Engaging patients in registry development can increase sustainability of a registry and patient retention in clinical registries. We sought the perspective of persons with dementia and their accompanying family members about their registry participation experiences, barriers and facilitators to participation, and potential avenues for improvement of registry processes such as recruitment, data collection, and knowledge translation. Two semi-structured focus groups with persons with dementia and their family members ( n = 18) were conducted and analyzed using thematic content analysis. Participants were recruited from an existing patient registry made up of patients currently being seen in a dementia assessment clinic. The main themes identified included altruistic motives with regards to registry participation; and access to and privacy of personal health information. As electronic health records are becoming more common, understanding barriers and facilitators from the perspectives of people with dementia is essential to inform the future development of cognitive condition-related registries. The results from our focus groups identified engagement strategies and solutions to overcome perceived barriers for individuals experiencing progressive cognitive decline to participate in longitudinal registry projects.

Recruiting Persons with Dementia and Caregivers in a Clinical Trial: Dyads Perceptions

“…In all dyads, either the CG or the PLWD expressed an interest in educating themselves. Our findings are similar to another qualitative study that found that the personal benefit of education was one of the motivators for PLWD to enroll in a research registry (Lee et al, 2019). While the parent study described in this article had a core component of providing education to both the intervention and control group, we do recognize that not all clinical trials would incorporate education into their protocol.…”

“…We found participants enrolled in the trial because they wanted to support another person. Altruism has been found to be related to enrollment in clinical trials in other research works (Bardach et al, 2018;Cox, et al, 2019;Lee et al, 2019). For example, in a survey of 87 individuals enrolled in one dementia clinical trial, the majority of participants rated the potential to help themselves or a loved one and to help others in the future, as important factors that affected their decision to enroll in the trial; few respondents reported participating to make others happy (Bardach et al, 2018).…”

“…Teams might want to consider increasing incentive amounts if potential participants feel it is too low and is a barrier to recruitment. In addition, research has illuminated that research participants appreciate other incentives such as refreshments, parking reimbursements, and covering transportation costs (Lee et al, 2019). Investigators may want to think creatively about the incentives they could offer in line with their study protocol to increase research participation.…”

Understanding the impact of the COVID-19 pandemic on well-being and virtual care for people living with dementia and care partners living in the community

“…This work leverages data systems employed to capture patient data in the PROMPT registry, demonstrating another use of clinical patient registries for meaningful patient engagement and service improvement. Previous work has shown that neurological and psychiatric patient populations do not see registry participation as burdensome but as an altruistic way to contribute to research that may or may not also provide personal benefit (Lee et al, 2019). Enhancing communication and preparation for clinic appointments has been shown to improve health outcomes in non-pandemic times (Entwistle & Watt, 2006;Street et al, 2009), and we can reasonably extrapolate that this would be true during times of social and physical distancing as experienced during the COVID-19 pandemic.…”

Understanding the impact of the COVID-19 pandemic on well-being and virtual care for people living with dementia and care partners living in the community

“…This work leverages data systems employed to capture patient data in the PROMPT registry, demonstrating another use of clinical patient registries for meaningful patient engagement and service improvement. Previous work has shown that neurological and psychiatric patient populations do not see registry participation as burdensome, but as an altruistic way to contribute to research that may or may not also provide personal benefit (Lee et al, 2019). Enhancing communication and preparation for clinic appointments has been shown to improve health outcomes in non-pandemic times (Entwisthle & Watt, 2006; Street et al, 2009) and we can reasonably extrapolate that this would be true during times of social and physical distancing, as experienced during the COVID-19 pandemic.…”