A framework and process for community-engaged, mixed-methods cancer needs assessments.

PURPOSE: Community health needs assessments are required for most state and local public health agencies and non-profit hospitals. Typically based on community health improvement planning models, these assessments encompass overall community health and multiple diseases to inform program planning. National Cancer Institute (NCI)-designated Cancer Centers and community-based cancer-focused programs share the goal of reducing cancer burden in the catchment areas they serve. However, to date, no published models exist to guide cancer-specific needs assessments for a determined geographic area that can inform both public health and research initiatives. The purpose of this article is to outline a cancer needs assessment (CNA) framework and community-engaged, mixed-methods process, along with a case study of how we applied it in Kentucky. METHODS: We convened a steering committee of key organizational partners to provide input throughout the process. We developed a conceptual framework of multi-level determinants affecting cancer-related outcomes. We incorporated both quantitative and qualitative data gathered through a variety of means, including a novel application of group concept mapping to guide definition of priorities. RESULTS: The resulting CNA has helped guide strategic planning and priorities for Kentucky's Cancer Action Plan, Markey Cancer Center, state agencies, and community-based organizations. CONCLUSION: This framework and process can be used collaboratively by cancer center Community Outreach and Engagement offices, public health agencies, oncology programs, and community partners to plan impactful cancer control programs and research in their catchment areas. Universities can also use them to inform the planning of community engagement and health equity research efforts.

Measurement of provider fidelity to immunization guidelines: a mixed-methods study on the feasibility of documenting patient refusals of the human papillomavirus vaccine.

BACKGROUND: Assessment and feedback is a common implementation strategy to improve healthcare provider fidelity to clinical guidelines. For immunization guidelines, fidelity is often measured with doses administered during eligible visits. Adding a patient refusal measure captures provider fidelity more completely (i.e., all instances of a provider recommending a vaccine, resulting in vaccination or refusal) and enables providers to track patient vaccine hesitancy patterns. However, many electronic health record (EHR) systems have no structured field to document multiple instances of refusals for specific vaccines, and existing billing codes for refusal are not vaccine specific. This study assessed the feasibility of a novel method for refusal documentation used in a study focused on human papillomavirus (HPV) vaccine. METHODS: An observational, descriptive-comparative, mixed-methods study design was used to conduct secondary data analysis from an implementation-effectiveness trial. The parent trial compared coach-based versus web-based practice facilitation, including assessment and feedback, to increase HPV vaccination in 21 community-based private pediatric practices. Providers were instructed to document initial HPV vaccine refusals in the EHR's immunization forms and subsequent refusals using dummy procedure codes, for use in assessment and feedback reports. This analysis examined adoption and maintenance of the refusal documentation method during eligible well visits, identified barriers and facilitators to documentation and described demographic patterns in patient refusals. RESULTS: Seven practices adopted the refusal documentation method. Among adopter practices, documented refusals started at 2.4% of eligible well visits at baseline, increased to 14.2% at the start of implementation, peaked at 24.0%, then declined to 18.8%. Barriers to refusal documentation included low prioritization, workflow integration and complication of the billing process. Facilitators included high motivation, documentation instructions and coach support. Among adopter practices, odds of refusing HPV vaccine were 25% higher for patients aged 15-17 years versus 11-12 years, and 18% lower for males versus females. CONCLUSIONS: We demonstrated the value of patient refusal documentation for measuring HPV vaccination guideline fidelity and ways that it can be improved in future research. Creation of vaccine-specific refusal billing codes or EHR adaptations to enable documenting multiple instances of specific vaccine refusals would facilitate consistent refusal documentation. Trial Registration NCT03399396 Registered in ClinicalTrials.gov on 1/16/2018.

A pilot study of a culturally-appropriate, educational intervention to increase participation in cancer clinical trials among African Americans and Latinos.

AIM: Culturally-appropriate, educational programs are recommended to improve cancer clinical trial participation among African Americans and Latinos. This study investigated the effect of a culturally-appropriate, educational program on knowledge, trust in medical researchers, and intent for clinical trial participation among African Americans and Latinos in Middle Tennessee. METHOD: Trained community health educators delivered a 30-min presentation with video testimonials to 198 participants in 13 town halls. A pre-post survey design was used to evaluate the intervention among 102 participants who completed both pre- and post-surveys one to two weeks after the session. RESULTS: Paired-sample t-test showed significant increases in unadjusted mean scores for knowledge (p < 0.001), trust in medical researchers (p < 0.001), and willingness to participate in clinical trials (p = 0.003) after the town halls in the overall sample. After adjusting for gender and education, all three outcomes remained significant for the overall sample (knowledge: p < 0.001; trust in medical researchers: p < 0.001; willingness: p = 0.001) and for African Americans (knowledge: p < 0.001; trust in medical researchers: p = 0.007; willingness: p = 0.005). However, willingness to participate was no longer significant for Latinos (knowledge: p < 0.001; trust in medical researchers: p = 0.034; willingness: p = 0.084). CONCLUSIONS: The culturally-appropriate, educational program showed promising results for short-term, clinical trial outcomes. Further studies should examine efficacy to improve research participation outcomes.

Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities.

BACKGROUND: Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. METHODS: We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. RESULTS: Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. CONCLUSIONS: Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.

Cancer InFocus: Tools for Cancer Center Catchment Area Geographic Data Collection and Visualization.

BACKGROUND: The NCI added Community Outreach and Engagement (COE) requirements for NCI-designated cancer centers in 2017, including the charge of characterizing the cancer burden in the geographic area served by their center (i.e., catchment area). Doing so helps cancer centers better identify needs and areas of inequality in their populations to guide research and outreach. To accomplish this, current and comprehensive data must be gathered from multiple sources and analyzed by the COE-a task that is tedious and inefficient. In this paper we present an efficient solution, known as Cancer InFocus, to collecting and visualizing quantitative data that we have generalized for use by other cancer centers on their catchment areas. METHODS: Cancer InFocus utilizes open source programming languages and modern data collection techniques to gather and transform publicly-available data from various sources for use in specific geographic contexts. RESULTS: Cancer InFocus delivers a choice of two routes for creating interactive online mapping applications that visualize cancer incidence and mortality rates, along with relevant social determinant and risk factor variables, at various geographic levels for a defined cancer center catchment area. CONCLUSIONS: Generalized software has been produced to collect and visualize data on any set of U.S. counties, which can be automated to continue providing the most up-to-date data. IMPACT: Cancer InFocus provides tools for cancer centers to accomplish the critical task of maintaining current and comprehensive catchment area data. The open source format will facilitate future enhancements through user collaboration.

Providers' Perceptions of Parental Human Papillomavirus Vaccine Hesitancy: Cross-Sectional Study.

BACKGROUND: Human papillomavirus (HPV) vaccine hesitancy among parents contributes to low vaccination coverage in adolescents. To improve health care provider communication and vaccine recommendation practices with hesitant parents, it is important to understand how providers perceive parental HPV vaccine hesitancy. OBJECTIVE: This study aimed to characterize perceived reasons for parental HPV vaccine hesitancy and identify factors associated with perceived parental hesitancy among providers at community-based pediatric clinics. METHODS: In 2018, providers in 23 community-based pediatric clinics in Tennessee were invited to complete a Web-based baseline survey as part of a larger quality improvement study focused on HPV vaccine uptake. These survey data were used for a cross-sectional, secondary data analysis. Scale scores ranging from 0 to 100 were calculated for provider self-efficacy (confidence in ability to recommend HPV vaccine), provider outcome expectations (expectations that recommendation will influence parents' decisions), and perceived parental HPV vaccine hesitancy. Provider confidence in HPV vaccine safety and effectiveness were categorized as high versus low. Clinic-level exposures examined were clinic size and rural-urban location. Descriptive analyses were used to characterize perceived parental barriers by provider type. Mixed-effects linear regression models were fit taking one exposure variable at a time, whereas controlling for provider type, age, gender, and race to identify provider- and clinic-level factors associated with perceived parental barriers to HPV vaccination. RESULTS: Of the 187 providers located in the 23 clinics, 137 completed the survey. The majority of physician providers were white and female, with a higher percentage of females among nurse practitioners (NPs) and physician assistants (PAs). The most common parental barriers to HPV vaccination perceived by providers were concerns about HPV vaccine safety (88%), child being too young (78%), low risk of HPV infection for child through sexual activity (70%), and mistrust in vaccines (59%). In adjusted mixed models, perceived parental HPV vaccine hesitancy was significantly associated with several provider-level factors: self-efficacy (P=.001), outcome expectations (P<.001), and confidence in HPV vaccine safety (P=.009). No significant associations were observed between perceived parental HPV vaccine hesitancy and clinic-level factors clinic size nor location. CONCLUSIONS: Researchers developing provider-focused interventions to reduce parental HPV vaccine hesitancy should consider addressing providers' self-efficacy, outcome expectations, and confidence in HPV vaccine safety to help providers communicate more effectively with HPV vaccine hesitant parents.

Improving Community Advisory Board Engagement in Precision Medicine Research to Reduce Health Disparities.

Community Advisory Boards (CABs) are used in efforts to reduce health disparities; however, there is little documentation in the literature regarding their use in precision medicine research. In this case study, an academic-CAB partnership developed a questionnaire and patient educational materials for two precision smoking cessation interventions that involved use of genetic or genetically-informed information. The community-engaged research (CEnR) literature provided a framework for enhancing benefits to CAB members involved in developing research documents for use with a low-income, ethnically diverse population of smokers.The academic partners integrated three CEnR strategies: 1) in-meeting statements acknowledging their desire to learn from community partners, 2) in-meeting written feedback to and from community partners, and 3) a survey to obtain CAB member feedback post-meetings. Strategies 1 and 2 yielded modifications to pertinent study materials, as well as suggestions for improving meeting operations that were then adopted, as appropriate, by the academic partners. The survey indicated that CAB members valued the meeting procedure changes which appeared to have contributed to improvements in attendance and satisfaction with the meetings. Further operationalization of relevant partnership constructs and development of tools for measuring these aspects of community-academic partnerships is warranted to support community engagement in precision medicine research studies.