Although African Americans (AA) experience the highest rates of Alzheimer?s Disease (AD), they are paradoxically and dramatically underrepresented in AD trials.1?5 Preclinical AD biomarker research, important to the development of AD prevention, presents additional challenges to inclusion. Such studies must retain non-symptomatic participants over time and involve invasive biomarker data collection methods such as lumbar puncture (LP).6?8 Disclosure of participant risk of AD is another potential barrier and little is known about the socio-cultural meaning of disclosure in non-white communities.9 Building upon the success of preliminary research and the resources of the Wisconsin Alzheimer?s Research Center (WADRC), Collaborative Center for Health Equity (CCHE), and the Wisconsin Alzheimer?s Institute (WAI), we propose a feasibility test of an innovative mixed methods approach to assess willingness to participate in preclinical AD research that accounts for: (1) the relative weight and interaction of multiple factors that influence the decision to participate in research; and the (2) estimation of risk (connected to trust) in the absence of interpersonal trust. The mixed methods story deck (SD) is a simple, gamified card sort adaptation of a factorial survey designed to explore choice as well as the discernment of complex concepts such as trust, risk, and benefit from culturally defined heuristics, or mental shortcuts used in decision making. 27?30 The method has been used recently to explore the components of trustworthiness in the decision to participate in genomics research31,32 but has yet to be applied to more invasive data collection procedures such as LP or complex issues such as the disclosure of AD risk. Project aims are to: (1) quantitatively determine patterns of decision making relative to LP research participation among AA (n=85) (aged 40+) living in Dane County, WI; and (2) qualitatively explore the relative importance and meaning of factors in the decision to participate in LP research among African Americans through this mixed method approach. Analysis will include general linear models and modern classification and regression tree (CART) methodology as well as a modified grounded theory approach to qualitative analyses. If successful with more invasive data collection, this method could be applied to larger, representative samples of participants to provide an accurate and actionable understanding of the dynamics of research engagement involving a wide range of studies. Moreover, this simple method could be used to gauge participant preference and priorities tied to specific communities regarding any combination of attributes of a recruitment plan including other forms of data collection, approaches or use of incentives thus provide timely information about community needs, desires and perceptions before recruitment plans are finalized or implemented.
In response to the continued underrepresentation of African Americans in Alzheimer?s disease research especially regarding invasive data collection techniques such as lumbar punctures, this study seeks to test the feasibility of an innovative method to explore the interaction of multiple factors that influence the decision to participate in research that can be applied to representative samples of, typically underrepresented, participants. Through a gamified, card sort adaptation of a factorial survey design, we will examine a range of study ?attributes? and determine: how each attribute contributes to the decision to participate in research; the relative importance of each attribute; the ways in which attributes interact to create a final decision; the socially-constructed meaning of attributes (relative to social group); and how the concept of trustworthiness is expressed symbolically to impact the decision to participate. Our approach is designed to create: (1) a more accurate and actionable understanding of the challenges of research engagement; and (2) an effective and simple methodology that can be used to test the feasibility/acceptability of research design attributes prior to recruitment for a wide range of studies.
