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 (Ms = 1.36-4.25, SDs = 0.81-1.46, all on 5-point Likert scales) among employees of 10 out of the 17 FQHCs in Wisconsin. In total, 347 clinical team members and 349 non-clinical staff members (a) indicated their levels of (dis)agreement with all 46 belief items and (b) reported vaccine acceptance (dichotomized, acceptance = 77.6%) as well as recommendation intentions (dichotomized, yes = 73.9%). We carried out the Hornik & Woolf analyses in a multilevel logistic regression framework with bootstrapping to rank order all beliefs, segmented by subgroup and behavioral outcome. Our results suggest that communication-based interventions should promote beliefs such as those related to perceived safety and efficacy, rather than normative pressure from peers, while aiming to reduce doubts about information withholding and manipulation, the safety of the mRNA technology, the approval process, and "unnatural" ingredients in the vaccines. Subgroup-specific belief rankings are also provided. This study demonstrates the usefulness of incorporating the H&W approach into community-engaged research with local healthcare systems to improve health messaging for vaccine promotion.

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. The current qualitative research with, largely, insured African American women ( n = 26), health navigators ( n = 6), and community stakeholders ( n = 24) indicates both positive and negative factors influencing decision making. The women in our sample believe in the value of early detection and are motivated to screen in response to encouragement from health providers. However, they also report several factors that contribute to their decisions to delay or not screen. These include (1) perceptions that the health community itself is confused about the need for screening, (2) perceptions that White women are the priority population for breast cancer, (3) family roles that prohibit self-care and encourage secrecy, and (4) fear of diagnosis. Participants report not feeling included in national-level health promotion campaigns. It is argued that African American women, in particular, may benefit from more nuanced health information about their risk.

"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.

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. Using a community-engaged approach, we developed social media campaign videos varying in (a) featured messengers (clinicians versus community leaders) and (b) the presence of personal testimonials. We conducted a national online experiment (N = 1,364 rural adults) in spring 2022. We found that videos featuring clinicians serving rural communities and their testimonials increased (a) vaccination intentions in the unvaccinated group (4-point scale, b = 0.23, p =.015) and (b) intention to discuss the messages with others (4-point scale, b = 0.14, p =.037), share the message (4-point scale, b = 0.15, p =.026), and promote the vaccines to others (9-point scale, b = 0.48, p =.013). Results suggest that vaccine promotional social media campaigns targeting rural populations can benefit from including clinician testimonials.

"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.

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. For our community organization, the partnership has evolved to create substantial benefits through opportunities for new collaborations, service program development and grantsmanship. Several factors contributed to our success including sustained stable funding not tied to an individual research project and academic investment in community capacity.

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. This experiment involved the recruitment of African American and Latino participants in a smartphone based survey at a temporary, charitable, dental event sponsored, in part, by the research team, in order to explore the impact of setting and approach on recruitment outcomes. 211 participants enrolled including a significant representation of African Americans (51%) and Latinos (31%) and those with education levels at high school or less (37%). Interviews conducted after the study confirmed that our recruitment efforts within the context of a service event affected the decision to participate. While further research is necessary, this experiment holds promise for the engagement of underrepresented groups in research.

"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., what are the symbolic representations or heuristics of trustworthiness in decision-making?); and (4) how participants see factors to counterweigh each other. METHODS: We sought a methodology that would afford exploration of the compensatory nature of decision-making where some choice attributes may be weighed differently than others as well as the use of heuristics (shortcuts to estimate key concepts in the mentally taxing task of decision-making) for concepts such as trustworthiness. We used a qualitative story deck to create hypothetical research scenarios with variable attributes (i.e., researcher race/ethnicity; institutional affiliation; research goal; and biospecimen requested) to determine how individuals find and interpret information to make decisions about research participation. These semi-structured interviews (n = 82) were conducted in African American barbershops in Baltimore City and Prince George's County, Maryland. RESULTS: Quantitative and qualitative analysis was completed. Findings include that, even in the absence of interpersonal connection, trustworthiness can be communicated through multiple factors, such as (1) shared values with researchers and (2) familiarity. Conversely, (1) ambiguity, especially regarding the use of biospecimens, (2) negative reputations, and (3) perceptions of "hidden agendas" were associated with a lower willingness to participate. However, the alignment of participant and research goals was weighed more heavily in decisions than other factors. CONCLUSION: This study finds that negatively assessed characteristics in research design do not result in automatic rejections of participation. Negative assessments can be mitigated by emphasizing the multiple factors that communicate trustworthiness in the consent process, which may improve rates of research participation.

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. RESULTS: Patients with higher incomes, more education, female physicians, and of younger ages reported more complete physician discussions of the IOM Guidelines. No significant differences were noted between African American and Caucasian patients. CONCLUSION: Patients at greatest risk for breast cancer recurrence - those with less education, income, and resources - report limited guidance from their physicians about evidence-based, follow-up care guidelines, designed to minimize their risk. PRACTICE IMPLICATIONS: Physicians need strategies for effectively delivering the IOM Guidelines for Survivorship Care to disadvantaged breast cancer patients, to promote enhanced quality of life and reduced risk of recurrence.

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. SAMPLE: 39 African American breast cancer survivors with a mean age of 55. METHODS: Each participant contributed to one of four two-hour focus group discussions and completed brief questionnaires regarding sociodemographic characteristics and cancer-specific data. Focus group topics included involvement in discussions and decision making about survivorship care, specific instructions and information that physicians provided regarding follow-up medical care and preventive health actions, concerns about recurrence and ways to prevent it, and sources of information used to develop survivorship care plans. MAIN RESEARCH VARIABLES: Survivorship care, patient-provider communication, information delivery methods, and African American breast cancer survivors. FINDINGS: Participants reported gaps in the information given to them by physicians about their diagnosis, treatments, side effects, and guidelines for follow-up care. Participants expressed strong interest in self-care practices aimed at reducing their risk of recurrence and receiving evidence-based information and guidelines from healthcare providers. The majority (about 90%) reported physician checkups and mammography screening during the prior year, whereas only 54% reported making daily efforts to improve their health and reduce their risk of recurrence. Although evidence-based guidelines are available to healthcare providers delivering follow-up care to breast cancer survivors, more than 90% of participants in the present study reported a lack of specific recommendations regarding diet or physical activity as ways to improve quality of life and health as a cancer survivor. CONCLUSIONS: The present study underscores 2006 findings from the Institute of Medicine that strategies for delivering information and guidance to cancer survivors and coordinating their care remain important issues for patients and their healthcare providers. IMPLICATIONS FOR NURSING: The present study's findings highlight the need expressed by breast cancer survivors for comprehensive guidance from healthcare providers in developing plans of care that improve patients' quality of life and target recurrence risk. Guidelines are available for dissemination and use in medical settings; however, the guidelines have not been incorporated into standard medical practice for patients with cancer. Information about long-term follow-up care after primary treatment should target the specific needs of survivors from diverse ethnic, socioeconomic, and educational backgrounds to promote understanding of surveillance to detect recurrence, long-term effects of cancer treatments, and general health maintenance.