"My Blood, You Know, My Biology Being out There ": Consent and Participant Control of Biological Samples.

The widespread and persistent underrepresentation of groups experiencing health disparities in research involving biospecimens is a barrier to scientific knowledge and advances in health equity. To ensure that all groups have the opportunity to participate in research and feel welcome and safe doing so, we must understand how research studies may be shaped to promote inclusion. In this study, we explored the decision to participate in hypothetical research scenarios among African American adults (n = 169) that varied on the basis of four attributes (form of consent, reason for research, institutional affiliation and race of the researcher). Findings indicate that participants were largely willing to contribute to biobanks but significantly preferred opportunities where they had control over the use of their biological samples through tiered or study-specific forms of consent. Broad consent procedures, although common and perhaps preferred by participants with high trust in researchers, may amount to an exclusionary practice.

"I Want to Know Everything ...  ": The Return of Research Results and the Importance of Transparency in the Acceptability of Lumbar Punctures for African American Older Adults.

BACKGROUND: Although African Americans experience the highest risk of Alzheimer's disease (AD), they are dramatically underrepresented in preclinical biomarker research. This is especially true for studies involving lumbar puncture as it may involve more perceived risk even for those participants who are otherwise supportive of research. OBJECTIVE: To understand the unique concerns of African American participants regarding biomarker studies involving lumbar puncture who demonstrate support for AD research. METHODS: Study participants were African American adults contacted through an AD research registry. We employed a novel method used to create hypothetical research studies varying on a set number of factors. The method is designed to collect potential patterns in decision making regarding research participation but differs from experimental vignette design in that the survey is administered with an accompanying qualitive interview to determine the meaning participants ascribe to factors independently and in conjunction with one another. RESULTS: Sixty-one participants each reviewed three randomly selected research scenarios and created their "ideal" study involving lumbar puncture. Scenario variables included: disclosure of research results, racial and ethnic identity of the researcher, recruitment method, and amount of incentive. CONCLUSION: Findings indicate that transparency in the return of AD research results to be the strongest driver of participation, followed by race of the researcher and amount of incentive. Recruitment method had limited impact on hypothetical decision making.

Preliminary assessment of connected speech and language as marker for cognitive change in late middle-aged Black/African American adults at risk for Alzheimer's disease.

Background: Connected speech-language (CSL) has been a promising measure of assessing cognitive decline in populations at-risk for Alzheimer's disease and related dementias (ADRD) populations. A common way to obtain CSL is through using picture description tasks such as the most frequently used image Cookie Theft (CT). However, questions have been raised about using CT for diverse communities. Little is known about the CSL produced in response to this task in Black/African American (BAA) adults aged 48-74. Goals: The present study's goals were to characterize CSL in BAA adults by sex and APOE-ε4 status from Milwaukee in the Wisconsin Registry for Alzheimer's Prevention (WRAP) study when presented with the CT picture description task and to identify differences in CSL output between BAAs and non-Hispanic Whites (NHW). Methods and Procedures: We collected CSL samples from the CT picture from 48 BAA participants and 30 NHW participants from the WRAP participants in Milwaukee, WI group. CSL was analyzed using chi-square tests, T-tests, and ANCOVA. Linear mixed effect regression models were used to determine the association between cognitive status and longitudinal CSL in BAA participants with more than 1 timepoint. Outcomes and Results: Declines in CSL of BAA participants were associated with subtle declines in cognition. Among BAA participants, we found no significant differences in speech measures in terms of sex and APOE-ε4 status. Our results showed no significant differences in speech measures between BAA and NHW groups. Conclusions: CSL analysis provides an inexpensive way to evaluate preclinical changes in cognitive status that may not be as affected by other factors, such as ethnocultural background. Future studies with larger sample sizes and participants from other geographic locations can clarify these findings.

The Wisconsin Alzheimer's Institute Dementia Diagnostic Clinic Network: A community of practice to improve dementia care.

BACKGROUND: The Wisconsin Alzheimer's Institute (WAI) Dementia Diagnostic Clinic Network is a community of practice formed in 1998 as a collaboration of community-based clinics from various healthcare systems throughout the state. Its purpose is to promote the use of evidence-based strategies to provide high quality care throughout Wisconsin for people with dementia. The purpose of this study is to describe the use of a community of practice to facilitate education of healthcare providers on best practices in dementia care, and the implementation of an interprofessional approach to diagnose and manage dementia and related disorders. METHODS: Cross-sectional study of the members of the WAI's Dementia Diagnosis Clinic Network. Characteristics of clinics and healthcare teams, learners' participation in educational events and educational outcomes were collected from evaluation forms. Number and characteristics of patients seen in the memory clinics were collected from de-identified data forms submitted by members to a centralized location for data analysis. RESULTS: The clinic network currently has 38 clinics affiliated with 26 different healthcare systems or independent medical groups in 21 of 72 Wisconsin counties. Most (56%) are based in primary care, 15% in psychiatry, and 29% in neurology. Between 2018 and 2021, we received data on 4710 patients; 92% were ≥65 years old, 60% were female, and 92% were white. Network members meet in-person twice a year to learn about innovations in the field of dementia care and to share best practices. Educational events associated with the network are shown to be relevant, useful, and improve knowledge and skills of participants. CONCLUSION: Communities of practice provide added value via shared best practices and educational resources, continuing education of the health workforce, continuous quality improvement of clinical practices, and adoption of new diagnostic and management approaches in dementia care.

"There's not much we can do " researcher-level barriers to the inclusion of underrepresented participants in translational research.

INTRODUCTION: The lack of diversity in health research participation has serious consequences for science as well as ethics. While there is growing interest in solving the problem, much of the work to date focuses on attitudes of distrust among members of underrepresented communities. However, there is also a pressing need to understand existing barriers within the cultural and structural context of researchers and research staff. METHODS: This study adopted a sequential exploratory mixed-methods design to allow for a focused examination of barriers to inclusive research recruitment among researchers and staff. Barriers first identified from an initial quantitative investigation (web-based survey; n = 279) were further explored through qualitative methods (key informant interviews; n = 26). Participants were investigators and research team members in both phases of the study. RESULTS: The survey revealed a paradoxical disconnect between participants' reported belief in the abstract value of diversity in research participation (87.1% important/extremely important) and belief in it as an important goal in their own specific research (38.3% important/extremely important). Interviews reveal that researchers and staff perceive many barriers to the recruitment of members of underrepresented groups and hold a general view of diversity in research as an impractical, even unattainable, goal. CONCLUSIONS: It is crucial that principal investigators not only understand the consequences of the continued exclusion of marginalized groups from research but also implement strategies to reverse this trend and communicate with research staff on the issue. While individual bias does play a role (ex: a priori assumptions about the willingness or ability of members of underrepresented groups to participate), these behaviors are part of a larger context of systemic racism.

Traversing the Aging Research and Health Equity Divide: Toward Intersectional Frameworks of Research Justice and Participation.

Meaningful reductions in racial and ethnic inequities in chronic diseases of aging remain unlikely without major advancements in the inclusion of minoritized populations in aging research. While sparse, studies investigating research participation disparities have predominantly focused on individual-level factors and behavioral change, overlooking the influence of study design, structural factors, and social determinants of health on participation. This is also reflected in conventional practices that consistently fail to address established participation barriers, such as study requirements that impose financial, transportation, linguistic, and/or logistical barriers that disproportionately burden participants belonging to minoritized populations. These shortcomings not only risk exacerbating distrust toward research and researchers, but also introduce significant selection biases, diminishing our ability to detect differential mechanisms of risk, resilience, and response to interventions across subpopulations. This forum article examines the intersecting factors that drive both health inequities in aging and disparate participation in aging research among minoritized populations. Using an intersectional, social justice, and emancipatory lens, we characterize the role of social determinants, historical contexts, and contemporaneous structures in shaping research accessibility and inclusion. We also introduce frameworks to accelerate transformative theoretical approaches to fostering equitable inclusion of minoritized populations in aging research.

A Case Study on A University-Community Partnership to Eliminate Racial Disparities in Infant Mortality: Effective Strategies and Lessons Learned.

This case study discusses the implementation framework, effective strategies, and lessons learned of a university-community partnership addressing racial disparities in infant mortality. The partnership was successful at enhancing coordination within service delivery systems for maternal and child health programs. Results: the elimination of waiting list for services, maximizing federal and state reimbursement, the adoption of culturally-appropriate intervention practices, increasing racial diversity in the workforce, diffusing silos, and facilitating healthier relationships among service providers. Key lessons: activating the collective strengths among a network of diverse community stakeholders with shared interests, prioritizing black voices in the change process, and capacity building opportunities.