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.

Patient perceptions, opinions and satisfaction of telehealth with remote blood pressure monitoring postpartum.

BACKGROUND: Our aim was to conduct a post participation survey of respondent experiences with in-home remote patient monitoring via telehealth for blood pressure monitoring of women with postpartum hypertension. We hypothesized that the in-home remote patient monitoring application will be implemented with strong fidelity and have positive patient acceptability. METHODS: This analysis was a planned secondary analysis of a non-randomized controlled trial of telehealth with remote blood pressure patient monitoring for postpartum hypertension compared to standard outpatient monitoring in women with a hypertension-related diagnosis during pregnancy. In collaboration with survey experts, we developed a 41-item web-based survey to assess 1) perception of quality of care received, 2) ease of use/ease to learn the telehealth program, 3) effective orientation of equipment, 4) level of perceived security/privacy utilizing telehealth and 5) problems encountered. The survey included multiple question formats including Likert scale responses, dichotomous Yes/No responses, and free text. We performed a descriptive analysis on all responses and then performed regression analysis on a subset of questions most relevant to the domains of interest. The qualitative data collected through open ended responses was analyzed to determine relevant categories. Intervention participants who completed the study received the survey at the 6-week study endpoint. RESULTS: Sixty six percent of respondents completed the survey. The majority of women found the technology fit easily into their lifestyle. Privacy concerns were minimal and factors that influenced this included age, BMI, marital status, and readmissions. 95% of women preferred remote care for postpartum follow-up, in which hypertensive type, medication use and ethnicity were found to be significant factors in influencing location of follow-up. Most women were satisfied with the devices, but rates varied by hypertensive type, infant discharge rates and BMI. CONCLUSIONS: Postpartum women perceived the telehealth remote intervention was a safe, easy to use method that represented an acceptable burden of care and an overall satisfying method for postpartum blood pressure monitoring. TRIAL REGISTRATION: ClinicalTrials.gov identification number: NCT03111095 Date of registration: April 12, 2017.

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. Therefore, this study explored these associations and the opportunity for better care coordination. METHODS: Oral health data from the 2014 Mid-Maryland Mission of Mercy and Health Equity Festival event was analyzed. A descriptive analysis assessed frequencies and percentages of participant sociodemographics characteristics, oral health and chronic disease risk(s), and dental services delivered. Chi-square tests and multivariate logistic regression were conducted to determine the associations between 1) oral health and chronic disease risk(s) and dental services; and 2) oral health and chronic disease risk(s) and participant characteristics. RESULTS: Approximately 66.2% (n = 666) of the 1007 participants had one or more chronic conditions and/or risk factors (diabetes, high blood pressure, and tobacco use). These individuals had a significantly higher likelihood of receiving an oral surgery procedure (specifically, tooth extraction) (only one condition/risk: OR = 2.40, 95%, CI = 1.48-3.90, p < .001; two conditions/risks: OR = 3.12, 95% CI = 1.78-5.46, p < .001). CONCLUSION: The 2014 Mid-Maryland Mission of Mercy emergency dental clinic attracted people with risk factors for oral and chronic diseases. Those with one or more risk factors were more likely to receive oral surgery (specifically, tooth extraction). These findings strongly suggest that organizers of MOM emergency dental clinics include wrap-around primary care, health promotion and disease prevention services along with provision of dental services. While such events will not solve the general and oral health challenges of participants, we believe they provide an opportunity to provide basic preventive services. These findings also present an opportunity to inform planning for future MOMs and emphasize the importance of using these public health events to create linkages with other services to support follow-up and care coordination.

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.

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. In 2010, we conducted in-depth, semi-structured, telephone interviews with investigators (N= 31) experienced with minority populations. Through the analysis of this coherent narrative, we uncovered both the symbolic and surface-level assumptions regarding minority recruitment to expose a deep structural understanding of race, ethnicity, and social context that is critical for bridging the true social difference between researchers and participants.

"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.

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. Children and adolescents (CA) with PWS usually display developmental delay and mild learning disability, and can develop endocrinopathies, scoliosis, respiratory difficulties (both central and obstructive sleep apnoea), challenging behaviours, skin picking, and mental health issues especially into adulthood. This consensus statement is intended to be a reference document for clinicians managing children and adolescents (up to 18 years of age) with PWS. It considers the bio-psycho-social domains of diagnosis, clinical assessment, and management in the paediatric setting as well as during and after transition to adult services. The guidance has been developed from information gathered from peer-reviewed scientific reports and from the expertise of a range of experienced clinicians in the United Kingdom and Ireland involved in the care of patients with PWS.

"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.

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). Participants created scenarios by randomly choosing cards from these categories and provided: (1) a judgement about their willingness to participate in the research project represented; and (2) their thought process in reaching a decision. The QSD has applicability to topics involving decision making or in cases where it would be beneficial to provide vignettes with alternate attributes. Additional benefits include: rapid establishment of rapport and engagement and the facilitation of discussion of little known or sensitive topics.

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. Asian/Pacific Islander, Hispanic/Latino, and White populations experienced substantial disparities for 2 measures each. DISCUSSION: Reducing health disparities is a statewide imperative. Root causes of health disparities, such as systemic racism and socioeconomic factors, should be addressed for groups experiencing multiple disparities, with focused efforts on selected measures when indicated.

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 (n = 279) included those affiliated with the University of Wisconsin Institute for Clinical and Translational Research (ICTR). Although all respondents reported an abstract belief in the importance of diversity, factors associated with higher levels of best practices knowledge and implementation included: (1) use of federal funding; (2) having fewer years of experience; (3) recruiting healthy participants; and (4) having recruitment training.

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.

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. Focus group interviews were conducted by using a moderator guide to address perceived benefits of and barriers to getting an eye examination; motivators for getting DFEs; and knowledge of eye examinations, glaucoma, and diabetic retinopathy. Participants also completed a questionnaire that provided demographic information. Quantitative and qualitative analyses were conducted. RESULTS: Cost or lack of sufficient insurance was identified as the most important barrier to getting a DFE. Also frequently mentioned was not having any symptoms and being too busy. The most frequently cited benefit of getting a DFE was to help prevent eye disease, whereas the most frequently reported motivating factor was experiencing a vision problem. Regarding knowledge, many people did not know the risk factors for glaucoma, but seemed to have a better understanding of how to reduce the effects of diabetes on their eyes. CONCLUSIONS: Study findings identified important links between financial resources and experiencing a vision problem and the adoption of preventive eye care in an urban African-American population.

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. RESULTS: Findings indicate that some elements of the concept of social capital are being used successfully, but that there are also substantial barriers to its full implementation. CONCLUSION: A lack of enforceable trust and associated institutional support for researchers is a detriment to research engagement. Efforts to remedy this would benefit large research projects, including clinical trials.

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. PARTICIPANTS: 14 African American men and women aged 40 or older with at least one first-degree family member affected by CRC. METHODOLOGIC APPROACH: In-depth focus groups were conducted until thematic saturation was achieved. Thematic analysis and data reduction were conducted using ATLAS.ti, version 5.0. MAIN RESEARCH VARIABLES: CRC screening barriers and facilitators. FINDINGS: The participants were mostly male, insured, and had a parent with CRC. Commonly reported barriers to CRC screening included fear of serious illness, mistrust of the medical establishment, potential screening discomfort, lack of information on CRC risk factors, lack of healthcare access, absence of symptoms, no knowledge of CRC screening benefits, community reticence about cancer, and CRC myths. Facilitating factors for CRC screening included a belief of personal risk for CRC, physician recommendations, and acknowledgment of age as a risk factor. Suggestions to increase screening rates included distribution of culturally appropriate and community-based efforts (e.g., mobile units, church-based interventions). Participants also suggested ways to increase motivation and provide social support for screening patients. CONCLUSIONS: Additional research is needed to identify and test effective screening approaches for this underserved group at increased risk for CRC. Study results suggest that cancer risk and screening education, coupled with screening opportunities in the community, may yield increased screening rates. INTERPRETATION: Lack of knowledge about CRC and CRC screening exists in the study population. Promoting screening across generations, developing and disseminating culturally appropriate educational materials within the community, and encouraging older individuals to screen to take care of their family may be appropriate interventions.