Fostering Trust in Public Health Messaging: Tailoring Communication for Rural Parents.

Purpose: As pandemic-related mistrust of public health recommendations in rural communities may compound gaps in pediatric immunizations, our team explored parents' perceptions of trustworthiness in messaging.

Design: Qualitative study using 4 virtual focus groups.

Setting: Rural Wisconsin.

Prader-Willi syndrome: guidance for children and transition into adulthood.

Prader-Willi syndrome (PWS) is a rare orphan disease and complex genetic neurodevelopmental disorder, with a birth incidence of approximately 1 in 10,000-30,000. Management of people with PWS requires a multi-disciplinary approach, ideally through a multi-disciplinary team (MDT) clinic with community support. Hypotonia, poor feeding and faltering growth are characteristic features in the neonatal period, followed by hyperphagia and risk of rapid weight gain later in childhood.

"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).

Designing and testing social media campaign messages to promote COVID-19 vaccine confidence among rural adults: A community-engaged approach featuring rural community leader and clinician testimonials.

Despite the growing availability of effective COVID-19 vaccines in rural communities in the United States, widespread vaccine hesitancy delays COVID-19 vaccine coverage in rural communities and threatens to worsen pre-pandemic rural-urban disparities in other vaccination rates, including influenza and routine pediatric immunizations. Therefore, there is an urgent need to develop communication-based interventions to improve vaccine confidence in rural America. This study demonstrates the efficacy of a community-engaged approach to developing social media campaign messages in promoting COVID-19 vaccine uptake and pro-vaccine social diffusion among rural adults.

"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.

Applying the Hornik & Woolf Approach to Identify Messaging Themes and Improve COVID-19 Vaccine Confidence Among Federally Qualified Health Centers' Workforce in Wisconsin.

The Federally Qualified Health Centers (FQHCs) in Wisconsin serve the most under-resourced communities in the state and are trusted sources in local communities. Although healthcare workers can be leveraged to champion COVID-19 vaccines, existing vaccine hesitancy among the FQHC workforce itself calls for research to identify promising messaging themes that can boost their vaccine confidence. In spring 2021, through a partnership with the Wisconsin Primary Health Association, we took a community-engaged approach to develop and field a survey including 46 beliefs ( = 1.

"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.

Building Sustainable Organizational and Community Capacity for Research Partnerships: A Decade of Experience.

The purpose of this article is to share community partner perspectives of impact and lessons learned from a decade long community-academic partnership between the Collaborative Center for Health Equity at the University of Wisconsin-Madison, and the United Community Center/Centro de la Comunidad Unida, a nonprofit community-based organization providing services across the lifespan for Latino communities of Milwaukee. The partnership was established in 2010 to support bidirectional communication, trust building and mutual benefit though community engaged research and collaborative student teaching. Over the years, we have achieved a variety of outcomes on both sides of the partnership.

Use of a Qualitative Story Deck to Create Scenarios and Uncover Factors Associated with African American Participation in Genomics Research.

To gain a complex understanding of willingness to participate in genomics research among African Americans, we developed a technique specifically suited to studying decision making in a relaxed social setting. The "Qualitative Story Deck," (QSD) is a gamified, structured elicitation technique that allows for the spontaneous creation of scenarios with variable attributes. We used the QSD to create research scenarios that varied on four details (race/ethnicity of the researcher; research goal; biospecimen requested; and institutional affiliation).

Training needs of investigators and research team members to improve inclusivity in clinical and translational research participation.

Despite increasing attention to the importance of diverse research participants, success across the translational research spectrum remains limited. To assess investigator and research team training needs, we conducted a web-based survey exploring barriers in knowledge and practice. Respondents ( = 279) included those affiliated with the University of Wisconsin Institute for Clinical and Translational Research (ICTR).

Identifying Substantial Racial and Ethnic Disparities in Health Outcomes and Care in Wisconsin Using Electronic Health Record Data.

Background: Our goal was to identify racial and ethnic disparities in health outcome and care measures in Wisconsin.

Methods: We used electronic health record data from 25 health systems submitting to the Wisconsin Collaborative for Healthcare Quality to identify disparities in measures, including vaccinations, screenings, risk factors for chronic disease, and chronic disease management.

Results: American Indian/Alaska Native and Black populations experienced substantial disparities across multiple measures.

"I'm a Little More Trusting": Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans.

Aims: This study sought to explore the decision to participate in genomics research for African American individuals. Our overall goal was to explore (1) the attributes that significantly contribute to willingness to participate in genomics research; (2) how these attributes are interpreted (what is their meaning?); (3) how trustworthiness is estimated in the decision to participate in research (i.e.

Setting and motivation in the decision to participate: An approach to the engagement of diverse samples in mobile research.

Internet and mobile based research are powerful tools in the creation of large, cohort studies (eCohort). However, recent analysis indicates that an underrepresentation of minority and low income groups in these studies might exceed that found in traditional research [1-5]. In this report, we present findings from an experiment in research engagement using the Eureka Research Platform developed to enroll diverse populations in support of biomedical clinical research.

Mission of Mercy emergency dental clinics: an opportunity to promote general and oral health.

Background: Mission of Mercy (MOM) emergency dental clinics are a resource for populations lacking access to dental care. We designed a MOM event incorporating health equity components with established community partners who shared a common vision of addressing the oral health, physical health, and social service needs of Maryland and Washington, DC area residents. Although studies have explored associations between oral and chronic health conditions, few studies to our knowledge have examined the relationship between these conditions and receipt of dental services.

Message Received: African American Women and Breast Cancer Screening.

African American women are more likely than other women to be diagnosed with breast cancer at a young age, to be diagnosed at a late stage, and to die from the disease. Yet we see evidence of irregular screening and follow-up. Previous research on psychosocial factors influencing decisions to screen reveals barriers: fear, fatalistic perceptions of cancer, inaccurate perceptions of risk, and associations with stigma.

Building a "Deep Fund of Good Will": Reframing Research Engagement.

Background: The engagement of underrepresented populations in health research has been an ongoing challenge. Yet, the participation of these groups is recognized as key to health equity.

Methods: Semi-structured interviews with 31 experienced investigators successful in the recruitment of underrepresented minorities were analyzed with reference to the concept of social capital to determine: 1) if it is actually in use by successful researchers although yet unidentified as such; and 2) if the rubric could shed light on new directions especially for those who find it difficult to implement community-engaged recruitment methods systematically.

The Symbolic Value and Limitations of Racial Concordance in Minority Research Engagement.

The well-documented underrepresentation of racial and ethnic minorities in research demands action. The field of health disparities research, however, lacks scientific consensus about how best to respectfully recruit underrepresented minority populations in research. We explore the investigators' perspective regarding how their own racial and ethnic background influenced their ability to recruit minorities, including (a) the influence of racial concordance ("race-matching") in research recruitment, (b) attributes and shared values important in the development of trust with minority communities, and (c) the role self-reflection plays in the development of meaningful research relationships.

African Americans with a family history of colorectal cancer: barriers and facilitators to screening.

Purpose/objectives: To explore barriers and facilitators of screening for colorectal cancer (CRC), as well as suggestions for improving screening among African Americans with first-degree relatives with CRC.

Research Approach: A qualitative, descriptive approach involving focus groups.

Setting: A community healthcare clinic in Baltimore, MD.

Evidence-based care for breast cancer survivors: communicating the Institute of Medicine Guidelines in medical practice.

Objective: To investigate patient reports of physician communication about the 2006 Institute of Medicine (IOM) Guidelines for Survivorship Care, and patient follow-up care behaviors in a sample of African American and Caucasian breast cancer survivors.

Methods: Fifteen-minute telephone interviews were conducted in a cross-sectional study with a sample of African American (n=30) and Caucasian (n=69) breast cancer patients, who were within 5 years of their diagnosis and primary treatment for breast cancer at two Baltimore, Maryland medical centers, during the summer of 2006. Multiple items assessed patient reports of physician discussions about IOM Guidelines, their recurrence concerns, and their follow-up treatment, screening, diet and exercise practices.

Exploring patient-physician communication in breast cancer care for African American women following primary treatment.

Purpose/objectives: To investigate patient-physician communication from the patient's perspective about guidelines and sources of information used in developing survivorship care and preferred avenues for information delivery to African American breast cancer survivors.

Design: Qualitative.

Setting: Medical centers in the eastern United States.

Knowledge, attitudes, and beliefs about dilated eye examinations among African-Americans.

Purpose: To understand factors that influence African-Americans' attitude toward eye examinations.

Methods: Ten focus groups were conducted with 86 African-Americans. Four focus groups were conducted with people 65 years of age and older who had not received a dilated fundus examination (DFE) in the past 2 years, two groups were held with people 65 years of age and older who had had a recent DFE, and two groups each were held with people 40 to 64 years of age, with and without recent DFEs.