Conceptualizing and Measuring Trust, Mistrust, and Distrust: Implications for Advancing Health Equity and Building Trustworthiness.

Trust is vital to public confidence in health and science, yet there is no consensus on the most useful way to conceptualize, define, measure, or intervene on trust and its related constructs (e.g., mistrust, distrust, and trustworthiness). In this review, we synthesize literature from this wide-ranging field that has conceptual roots in racism, marginalization, and other forms of oppression. We summarize key definitions and conceptual frameworks and offer guidance to scholars aiming to measure these constructs. We also review how trust-related constructs are associated with health outcomes, describe interventions in this field, and provide recommendations for building trust and institutional trustworthiness and advancing health equity. We ultimately call for future efforts to focus on improving the trustworthiness of public health professionals, scientists, health care providers, and systems instead of aiming to increase trust in these entities as they currently exist and behave.

All of Us participant perspectives on the return of value in research.

PURPOSE: To understand participant preferences for receiving specific types of research information, whether information preferences vary across sociodemographic groups, and the types of health providers participants could access to understand returned information. METHODS: All of Us Research Program participants completed a value of returning research information survey. Stratified sampling was implemented to enhance participant diversity and avoid noncoverage. We used weighted multivariable logistic regression to evaluate associations between the most valuable information types, access to providers, and sociodemographic variables. RESULTS: Participants (N = 20,405) were diverse in their race/ethnicity (eg, 52% were White, 18% were Hispanic/Latino or Spanish, 3% were Asian, and 20% were Black or African American). Most participants (78.6%) valued information about their risk of serious genetic diseases with available treatment. Primary care physicians, specialists, and genetic counselors were the top providers that participants could access for help understanding returned information. Information preferences and provider access varied across sociodemographic groups. For example, as income levels increased, the odds of placing value on genetic results indicating risk of serious disease with available treatment increased when compared with the lowest income levels (P value < .001). CONCLUSION: Although genetic information was most valuable to participants, preferences about specific information types varied across sociodemographic groups.

Combined Breast and Lung Cancer Screening Among Dual-Eligible Women: A Descriptive Study.

INTRODUCTION: Lung cancer is consistently the leading cause of cancer death among women in the United States, yet lung cancer screening (LCS) rates remain low. By contrast, screening mammography rates are reliably high, suggesting that screening mammography can be a "teachable moment" to increase LCS uptake among dual-eligible women. MATERIALS AND METHODS: This is a prospective survey study conducted at two academic institutions. Patients undergoing screening mammography were evaluated for LCS eligibility and offered enrollment in a pilot dual-cancer screening program. A series of surveys was administered to characterize participants' knowledge, perceptions, and attitudes about LCS before and after undergoing dual screening. Data were descriptively summarized. RESULTS: Between August 2022 and July 2023, 54 LCS-eligible patients were enrolled. The study cohort was 100% female and predominantly White (81%), with a median age of 57 y and median of 36 pack-y of smoking. Survey results showed that 98% felt they were at risk for lung cancer, with most (80%) motivated by early detection of potential cancer. Regarding screening barriers, 58% of patients lacked knowledge about LCS eligibility and 47% reported concerns about screening cost. Prior to undergoing LCS, 87% of patients expressed interest in combined breast and lung screening. Encouragingly, after LCS, 84% were likely or very likely to undergo dual screening again and 93% found the shared decision-making visit helpful or very helpful. CONCLUSIONS: Pairing breast and LCS is a feasible, acceptable intervention that, along with increasing patient and provider education about LCS, can increase LCS uptake and reduce lung cancer mortality.

Psychosocial impact of COVID-19 among adults in the southeastern United States.

Limited research has explored the mental health impact of coronavirus disease 2019 (COVID-19) in the U.S., especially among Black and low-income Americans who are disproportionately affected by COVID-19. To address this gap in the literature, we investigated factors associated with depressive and anxiety symptoms during the pandemic. From October to December 2020, over 4400 participants in the Southern Community Cohort Study (SCCS) completed a survey about the impact of the pandemic. The SCCS primarily enrolled adults with low income in 12 southeastern states. We used polytomous unconditional logistic regression to investigate factors associated with depressive and anxiety symptoms. About 28% of respondents reported mild or moderate/severe depressive symptoms and 30% reported mild or moderate/severe anxiety symptoms. Respondents in fair/poor health had significantly higher odds of moderate/severe depression and anxiety than those in very good/excellent health (depression: odds ratio (OR) = 4.72 [95% confidence interval (CI): 3.57-6.23]; anxiety: OR = 4.77 [95%CI: 3.63-6.28]). Similarly, living alone was associated with higher odds of moderate/severe depression and anxiety (depression: OR = 1.74 [95%CI: 1.38-2.18]; anxiety: OR = 1.57 [95%CI: 1.27-1.95]). Individuals whose physical activity or vegetable/fruit consumption decreased since the start of the pandemic also had higher odds of moderate/severe depression and anxiety. Results overall suggest that individuals in fair/poor health, living alone, and/or experiencing decreased physical activity and vegetable/fruit consumption have higher risk of depressive and anxiety symptoms. Clinical and public health interventions are needed to support individuals experiencing depression and anxiety during the pandemic.

Racial differences in user experiences and perceived value of electronic symptom monitoring in a cohort of black and white bladder and prostate cancer patients.

PURPOSE: Electronic patient-reported outcomes (ePROs) are increasingly being used for symptom monitoring during routine cancer care, but have rarely been evaluated in diverse patient populations. We assessed ePRO user experiences and perceived value among Black and White cancer patients. METHODS: We recruited 30 Black and 49 White bladder and prostate cancer patients from a single institution. Participants reported symptoms using either a web-based or automated telephone interface over 3 months and completed satisfaction surveys and qualitative interviews focused on user experiences and value. Using a narrative mixed methods approach, we evaluated overall and race-specific differences in ePRO user experiences and perceived value. RESULTS: Most participants selected the web-based system, but Blacks were more likely to use the automated telephone-based system than Whites. In satisfaction surveys, Whites more commonly reported ease in understanding and reporting symptoms compared with Blacks. Blacks more often reported that the ePRO system was helpful in facilitating symptom-related discussions with clinicians. During interviews, Blacks described how the ePRO helped them recognize symptoms, while Whites found value in better understanding and tracking symptoms longitudinally. Blacks also expressed preferences for paper-based ePRO options due to perceived ease in better understanding of symptom items. CONCLUSION: Electronic patient-reported outcomes are perceived as valuable for variable reasons by Black and White cancer populations, with greater perceived value for communicating with clinicians reported among Blacks. To optimize equitable uptake of ePROs, oncology practices should offer several ePRO options (e.g., web-based, phone-based), as well as paper-based options, and consider the e-health literacy needs of patients during implementation.

Medical Mistrust, Racism, and Delays in Preventive Health Screening Among African-American Men.

The contribution of medical mistrust to healthcare utilization delays has gained increased public health attention. However, few studies examine these associations among African-American men, who delay preventive healthcare more often and report higher levels of medical mistrust than non-Hispanic White men. Additionally, studies rarely account for other factors reportedly working in tandem with medical mistrust to increase African-American men's preventive health screening delays (i.e., everyday racism and perceived racism in healthcare). We examined associations between medical mistrust, perceived racism in healthcare, everyday racism, and preventive health screening delays. Analyses were conducted using cross-sectional data from 610 African-American men aged 20 years and older recruited primarily from barbershops in four US regions (2003-2009). Independent variables were medical mistrust (MM), everyday racism (ER), and perceived racism in healthcare (PRH). Dependent variables were self-reported routine checkup, blood pressure screening, and cholesterol screening delays. Using multiple logistic regression and tests for mediation, we calculated odds ratios and 95% confidence intervals to assess associations between the independent and dependent variables. After final adjustment, African-American men with higher MM were significantly more likely to delay blood pressure screenings. Men with more frequent ER exposure were significantly more likely to delay routine checkups and blood pressure screenings. Higher levels of PRH were associated with a significant increased likelihood of delaying cholesterol screening. MM did not mediate associations between ER and screening delays. Increasing preventive health screening among African-American men requires addressing medical mistrust and racism in and outside healthcare institutions.

Venetoclax responses of pediatric ALL xenografts reveal sensitivity of MLL-rearranged leukemia.

The clinical success of the BCL-2-selective BH3-mimetic venetoclax in patients with poor prognosis chronic lymphocytic leukemia (CLL) highlights the potential of targeting the BCL-2-regulated apoptotic pathway in previously untreatable lymphoid malignancies. By selectively inhibiting BCL-2, venetoclax circumvents the dose-limiting, BCL-XL-mediated thrombocytopenia of its less selective predecessor navitoclax, while enhancing efficacy in CLL. We have previously reported the potent sensitivity of many high-risk childhood acute lymphoblastic leukemia (ALL) xenografts to navitoclax. Given the superior tolerability of venetoclax, here we have investigated its efficacy in childhood ALL. We demonstrate that in contrast to the clear dependence of CLL on BCL-2 alone, effective antileukemic activity in the majority of ALL xenografts requires concurrent inhibition of both BCL-2 and BCL-XL We identify BCL-XL expression as a key predictor of poor response to venetoclax and demonstrate that concurrent inhibition of both BCL-2 and BCL-XL results in synergistic killing in the majority of ALL xenografts. A notable exception is mixed lineage leukemia-rearranged infant ALL, where venetoclax largely recapitulates the activity of navitoclax, identifying this subgroup of patients as potential candidates for clinical trials of venetoclax in childhood ALL. Conversely, our findings provide a clear basis for progressing navitoclax into trials ahead of venetoclax in other subgroups.

AKR1C3 is a biomarker of sensitivity to PR-104 in preclinical models of T-cell acute lymphoblastic leukemia.

PR-104, a phosphate ester of the nitrogen mustard prodrug PR-104A, has shown evidence of efficacy in adult leukemia clinical trials. Originally designed to target hypoxic cells, PR-104A is independently activated by aldo-keto-reductase 1C3 (AKR1C3). The aim of this study was to test whether AKR1C3 is a predictive biomarker of in vivo PR-104 sensitivity. In a panel of 7 patient-derived pediatric acute lymphoblastic leukemia (ALL) xenografts, PR-104 showed significantly greater efficacy against T-lineage ALL (T-ALL) than B-cell-precursor ALL (BCP-ALL) xenografts. Single-agent PR-104 was more efficacious against T-ALL xenografts compared with a combination regimen of vincristine, dexamethasone, and l-asparaginase. Expression of AKR1C3 was significantly higher in T-ALL xenografts compared with BCP-ALL, and correlated with PR-104/PR-104A sensitivity in vivo and in vitro. Overexpression of AKR1C3 in a resistant BCP-ALL xenograft resulted in dramatic sensitization to PR-104 in vivo. Testing leukemic blasts from 11 patients confirmed that T-ALL cells were more sensitive than BCP-ALL to PR-104A in vitro, and that sensitivity correlated with AKR1C3 expression. Collectively, these results indicate that PR-104 shows promise as a novel therapy for relapsed/refractory T-ALL, and that AKR1C3 expression could be used as a biomarker to select patients most likely to benefit from such treatment in prospective clinical trials.

Public Mistrust of the U.S. Health Care System's Profit Motives: Mixed-Methods Results from a Randomized Controlled Trial.

BACKGROUND: Decision makers are increasingly tasked with reducing health care costs, but the public may be mistrustful of these efforts. Public deliberation helps gather input on these types of issues by convening a group of diverse individuals to learn about and discuss values-based dilemmas. OBJECTIVE: To explore public perceptions of health care costs and how they intersect with medical mistrust. DESIGN AND PARTICIPANTS: This mixed-methods study analyzed data from a randomized controlled trial including four public deliberation groups (n = 96) and a control group (n = 348) comprising English-speaking adults aged 18 years and older. Data were collected in 2012 in four U.S. regions. APPROACH: We used data from four survey items to compare attitude shifts about costs among participants in deliberation groups to participants in the control group. We qualitatively analyzed deliberation transcripts to identify themes related to attitude shifts and to provide context for quantitative results about attitude shifts. KEY RESULTS: Deliberation participants were significantly more likely than control group participants to agree that doctors and patients should consider cost when making treatment decisions (ß = 0.59; p < 0.01) and that people should consider the effect on group premiums when making treatment decisions (ß = 0.48; p < 0.01). Qualitatively, participants mistrusted the health care system's profit motives (e.g., that systems prioritize making money over patient needs); however, after grappling with patient/doctor autonomy and learning about and examining their own views related to costs during the process of deliberation, they largely concluded that payers have the right to set some boundaries to curb costs. CONCLUSIONS: Individuals who are informed about costs may be receptive to boundaries that reduce societal health care costs, despite their mistrust of the health care system's profit motives, especially if decision makers communicate their rationale in a transparent manner. Future work should aim to develop transparent policies and practices that earn public trust.

Medical Mistrust and Colorectal Cancer Screening Among African Americans.

Despite well-documented benefits of colorectal cancer (CRC) screening, African Americans are less likely to be screened and have higher CRC incidence and mortality than Whites. Emerging evidence suggests medical mistrust may influence CRC screening disparities among African Americans. The goal of this systematic review was to summarize evidence investigating associations between medical mistrust and CRC screening among African Americans, and variations in these associations by gender, CRC screening type, and level of mistrust. MEDLINE, CINAHL, Web of Science, PsycINFO, Google Scholar, Cochrane Database, and EMBASE were searched for English-language articles published from January 2000 to November 2016. 27 articles were included for this review (15 quantitative, 11 qualitative and 1 mixed methods study). The majority of quantitative studies linked higher mistrust scores with lower rates of CRC screening among African Americans. Most studies examined mistrust at the physician level, but few quantitative studies analyzed mistrust at an organizational level (i.e. healthcare systems, insurance, etc.). Quantitative differences in mistrust and CRC screening by gender were mixed, but qualitative studies highlighted fear of experimentation and intrusiveness of screening methods as unique themes among African American men. Limitations include heterogeneity in mistrust and CRC measures, and possible publication bias. Future studies should address methodological challenges found in this review, such as limited use of validated and reliable mistrust measures, examination of CRC screening outcomes beyond beliefs and intent, and a more thorough analysis of gender roles in the cancer screening process.

Setting Boundaries: Public Views on Limiting Patient and Physician Autonomy in Health Care Decisions.

We obtained and qualitatively analyzed input from more than nine hundred citizens during seventy-six public deliberation sessions about patient and physician autonomy in decision making, setting health care boundaries, and the tensions among competing social values. Generally, participants resisted interference with the patient-physician relationship and believed strongly in the freedom of patient and physician to control individual medical decisions. However, during deliberation participants identified two situations where boundaries and regulations in health care were more acceptable: protecting people from harm and allocating limited resources. The core value of individual freedom was tempered in varying degrees by the values of concern for the greater good and fairness in allocating resources. Where tensions between values emerged, participants used different concepts-including accountability, transparency, trust, personal responsibility, and moral obligation-to navigate trade-offs. Fairly balancing the public's desire to protect individual freedom with their sense of responsibility for protecting the common good may be the key to developing acceptable, workable policies that promote evidence-based medical practice.

Racial discrimination and healthcare system trust among American adults with and without cancer.

BACKGROUND: Racial and ethnic minoritized groups report disproportionately lower trust in the healthcare system. Lower healthcare system trust is potentially related to increased exposure to racial discrimination in medical settings, but this association is not fully understood. We examined the association between racial discrimination in medical care and trust in the healthcare system among people with and without a personal cancer history. METHODS: We examined racial discrimination and trust in a nationally representative American adult sample from the Health Information National Trends Survey 6. Racial discrimination was defined as any unfair treatment in healthcare based on race or ethnicity. Trust in the healthcare system (eg, hospitals and pharmacies) was grouped into low, moderate, and high trust. Multinomial logistic regression models were used to compare low and moderate trust relative to high trust in the healthcare system and estimate odds ratios (ORs) and 95% confidence intervals (CIs). RESULTS: A total of 5,813 respondents (15% with a personal cancer history) were included 92% (n = 5,355) reported no prior racial discrimination experience during medical treatment. Prior experiences of racial discrimination were positively associated with low (OR = 6.12, 95% CI: 4.22-8.86) and moderate (OR = 2.70, 95% CI: 1.96-3.72) trust in the healthcare system, relative to high trust. Similar associations were observed when stratifying by personal cancer history. CONCLUSION: Respondents who reported racial discrimination during medical encounters had lower trust in the healthcare system, especially respondents with a personal cancer history. Our findings highlight the need to address racial discrimination experiences during medical care to build patient trust and promote healthcare access.

Patient Lung Cancer Screening Decisions and Environmental and Psychosocial Factors.

Importance: Screening for lung cancer using low-dose computed tomography is associated with reduced lung cancer-specific mortality, but uptake is low in the US; understanding how patients make decisions to engage with lung cancer screening is critical for increasing uptake. Prior research has focused on individual-level psychosocial factors, but environmental factors (eg, historical contexts that include experiencing racism) and modifying factors-those that can be changed to make it easier or harder to undergo screening-also likely affect screening decisions. Objective: To investigate environmental, psychosocial, and modifying factors influencing lung cancer screening decision-making and develop a conceptual framework depicting relationships between these factors. Design, Setting, and Participants: This multimethod qualitative study was conducted from December 2021 to June 2022 using virtual semistructured interviews and 4 focus groups (3-4 participants per group). All participants met US Preventive Services Task Force eligibility criteria for lung cancer screening (ie, age 50-80 years, at least a 20 pack-year smoking history, and either currently smoke or quit within the past 15 years). Screening-eligible US participants were recruited using an online panel. Main Outcomes and Measures: Key factors influencing screening decisions (eg, knowledge, beliefs, barriers, and facilitators) were the main outcome. A theory-informed, iterative inductive-deductive approach was applied to analyze data and develop a conceptual framework summarizing results. Results: Among 34 total participants (interviews, 20 [59%]; focus groups, 14 [41%]), mean (SD) age was 59.1 (4.8) years and 20 (59%) identified as female. Half had a household income below $20 000 (17 [50%]). Participants emphasized historical and present-day racism as critical factors contributing to mistrust of health care practitioners and avoidance of medical procedures like screening. Participants reported that other factors, such as public transportation availability, also influenced decisions. Additionally, participants described psychosocial processes involved in decisions, such as perceived screening benefits, lung cancer risk appraisal, and fear of a cancer diagnosis or harmful encounters with practitioners. In addition, participants identified modifying factors (eg, insurance coverage) that could make receiving screening easier or harder. Conclusions and Relevance: In this qualitative study of patient lung cancer screening decisions, environmental, psychosocial, and modifying factors influenced screening decisions. The findings suggest that systems-level interventions, such as those that help practitioners understand and discuss patients' prior negative health care experiences, are needed to promote effective screening decision-making.

Racial Disparities in Lung Cancer Stage of Diagnosis Among Adults Living in the Southeastern United States.

BACKGROUND: Black Americans receive a diagnosis at later stage of lung cancer more often than White Americans. We undertook a population-based study to identify factors contributing to racial disparities in lung cancer stage of diagnosis among low-income adults. RESEARCH QUESTION: Which multilevel factors contribute to racial disparities in stage of lung cancer at diagnosis? STUDY DESIGN AND METHODS: Cases of incident lung cancer from the prospective observational Southern Community Cohort Study were identified by linkage with state cancer registries in 12 southeastern states. Logistic regression shrinkage techniques were implemented to identify individual-level and area-level factors associated with distant stage diagnosis. A subset of participants who responded to psychosocial questions (eg, racial discrimination experiences) were evaluated to determine if model predictive power improved. RESULTS: We identified 1,572 patients with incident lung cancer with available lung cancer stage (64% self-identified as Black and 36% self-identified as White). Overall, Black participants with lung cancer showed greater unadjusted odds of distant stage diagnosis compared with White participants (OR,1.29; 95% CI, 1.05-1.59). Greater neighborhood area deprivation was associated with distant stage diagnosis (OR, 1.58; 95% CI, 1.19-2.11). After controlling for individual- and area-level factors, no significant difference were found in distant stage disease for Black vs White participants. However, participants with COPD showed lower odds of distant stage diagnosis in the primary model (OR, 0.72; 95% CI, 0.53-0.98). Interesting and complex interactions were observed. The subset analysis model with additional variables for racial discrimination experiences showed slightly greater predictive power than the primary model. INTERPRETATION: Reducing racial disparities in lung cancer stage at presentation will require interventions on both structural and individual-level factors.

County-level barriers in the COVID-19 vaccine coverage index and their associations with willingness to receive the COVID-19 vaccine across racial/ethnic groups in the U.S.

Background: County-level vaccination barriers (sociodemographic barriers, limited healthcare system resources, healthcare accessibility barriers, irregular healthcare seeking behaviors, history of low vaccination) may partially explain COVID-19 vaccination intentions among U.S. adults. This study examined whether county-level vaccination barriers varied across racial/ethnic groups in the U.S. and were associated with willingness to receive the COVID-19 vaccine. In addition, this study assessed whether these associations differed across racial/ethnic groups. Methods: This study used data from the REACH-US study, a large online survey of U.S. adults (N = 5,475) completed from January 2021-March 2021. County-level vaccination barriers were measured using the COVID-19 Vaccine Coverage Index. Ordinal logistic regression estimated associations between race/ethnicity and county-level vaccination barriers and between county-level vaccination barriers and willingness to receive the COVID-19 vaccine. Models adjusted for covariates (age, gender, income, education, political ideology, health insurance, high-risk chronic health condition). Multigroup analysis estimated whether associations between barriers and willingness to receive the COVID-19 vaccine differed across racial/ethnic groups. Results: American Indian/Alaska Native, Black/African American, Hispanic/Latino ELP [English Language Preference (ELP); Spanish Language Preference (SLP)], and Multiracial adults were more likely than White adults to live in counties with higher overall county-level vaccination barriers [Adjusted Odd Ratios (AORs):1.63-3.81]. Higher county-level vaccination barriers were generally associated with less willingness to receive the COVID-19 vaccine, yet associations were attenuated after adjusting for covariates. Trends differed across barriers and racial/ethnic groups. Higher sociodemographic barriers were associated with less willingness to receive the COVID-19 vaccine (AOR:0.78, 95% CI:0.64-0.94), whereas higher irregular care-seeking behavior was associated with greater willingness to receive the vaccine (AOR:1.20, 95% CI:1.04-1.39). Greater history of low vaccination was associated with less willingness to receive the COVID-19 vaccine among Black/African American adults (AOR:0.55, 95% CI:0.37-0.84), but greater willingness to receive the vaccine among American Indian/Alaska Native and Hispanic/Latino ELP adults (AOR:1.90, 95% CI:1.10-3.28; AOR:1.85, 95% CI:1.14-3.01). Discussion: Future public health emergency vaccination programs should include planning and coverage efforts that account for structural barriers to preventive healthcare and their intersection with sociodemographic factors. Addressing structural barriers to COVID-19 treatment and preventive services is essential for reducing morbidity and mortality in future infectious disease outbreaks.

Disparities in geospatial patterns of cancer care within urban counties and structural inequities in access to oncology care.

OBJECTIVE: To examine geospatial patterns of cancer care utilization across diverse populations in New Jersey-a state where most residents live in urban areas. DATA SOURCES/STUDY SETTING: We used data from the New Jersey State Cancer Registry from 2012 to 2014. STUDY DESIGN: We examined the location of cancer treatment among patients 20-65 years of age diagnosed with breast, colorectal, or invasive cervical cancer and investigated differences in geospatial patterns of care by individual and area-level (e.g., census tract-level) characteristics. DATA COLLECTION/EXTRACTION METHODS: Multivariate generalized estimating equation models were used to determine factors associated with receiving cancer treatment within residential counties, residential hospital service areas, and in-state (versus out-of-state) care. PRINCIPAL FINDINGS: We observed significant differences in geospatial patterns of cancer treatment by race/ethnicity, insurance type, and area-level factors. Even after adjusting for tumor characteristics, insurance type, and other demographic factors, non-Hispanic Black patients had a 5.6% higher likelihood of receiving care within their own residential county compared to non-Hispanic White patients (95% CI: 2.80-8.41). Patients insured with Medicaid and those without insurance had higher likelihoods of receiving care within their residential county compared to privately insured individuals. Patients living in census tracts with the highest quintile of social vulnerability were 4.6% more likely to receive treatment within their residential county (95% CI: 0.00-9.30) and were 2.7% less likely to seek out-of-state care (95% CI: -4.85 to -0.61). CONCLUSIONS: Urban populations are not homogenous in their geospatial patterns of cancer care utilization, and individuals living in areas with greater social vulnerability may have limited opportunities to access care outside of their immediate residential county. Geographically tailored efforts, along with socioculturally tailored efforts, are needed to help improve equity in cancer care access.

Assessing patient-level knowledge of precision medicine in a community health center setting.

As precision medicine approaches are implemented, cancer treatment decisions have come to require comprehension of genetic tests and their role in risk stratification and treatment options. Acceptance and implementation of precision medicine requires patient understanding of numeracy, genetic literacy, health literacy, and medical trust. Implementing precision medicine in a US federally qualified community health center (FQCHC) setting has received little attention. Using a mixed-methods approach, we sought to identify patient-level factors influencing the understanding of cancer risk and precision medicine among FQCHC patients. We enrolled 26 English-speaking adults aged 40-79 years. Participants enrolled in focus groups and completed surveys to assess patient-level understanding of precision medicine, numeracy, and health literacy. The majority of participants were female (77%) and self-identified as African American (89%). Approximately one-third reported having a high school degree or less. While health literacy was generally high, 42% felt that genes or genetics had little impact on health and most (69%) reported little familiarity with precision medicine. Many participants reported that trust in their providers was extremely or very important when receiving genetic tests. Numeracy levels were moderate, with nearly half reporting some discomfort working with fractions and 38% finding numerical information only occasionally useful. Findings suggest that patients may lack familiarity with precision medicine concepts relevant for understanding cancer treatment decisions. Future educational efforts may help bridge the gap in patient understanding and facilitate equitable opportunities for precision medicine for all patients, including those seeking care from community health centers.

Integrating participants as partners in research governance and operations: an approach from the All of Us Research Program Engagement Core.

OBJECTIVES: During the last two decades, researchers and funders increasingly recognised the value of engaging patients and communities in research. Despite progress, community engagement remains challenging. There are few examples of successful participant engagement in governance of large-scale research programmes. Here we describe efforts to engage participants as partners in new governance roles in the All of Us Research Program, a precision medicine research initiative which intends to enrol at least one million participants. Using intentional, participant-centric engagement strategies, the All of Us Engagement Core recruited and integrated a diverse group of participants into governance roles including Steering and Executive Committees. Evaluation measures included a survey to assess Consortium Members' readiness for participant engagement. RESULTS: Over a 3-year period, all items on the survey increased (higher readiness). Of the 291 respondents to the 2021 survey, respondents most frequently agreed that participant perspectives are essential (100%), participants understand enough to contribute meaningfully (94%) and participants should be involved in setting goals (96%). Respondents least frequently agreed that participants should have an equal voice in Working Groups (75%), Steering Committee (69%) and Executive Committee (63%). CONCLUSION: In conclusion, participants can be effectively integrated into large-scale research governance, which is associated with increased researcher readiness for engagement.

Patient perspectives on a proposed pharmacy-based colorectal cancer screening program.

Colorectal cancer (CRC) is a common and preventable cancer. CRC screening is underutilized, particularly within medically underserved communities. Most interventions aimed at increasing CRC screening are delivered through primary care clinics. Pharmacies are more accessible than traditional primary care settings and may be ideally suited for delivering CRC screening and increasing access. Fecal immunochemical test is an at-home, stool-based CRC screening test that could be distributed through pharmacies. The purpose of our study was to assess patient perspectives on receiving fecal immunochemical test-based CRC screening through pharmacies. We conducted semi-structured interviews with participants residing in North Carolina and Washington. Interviews explored acceptability and intervention design preferences for a pharmacy-based CRC screening program. The interview guide was informed by Andersen's Healthcare Utilization Model and the Theoretical Domains Framework. Interviews were conducted at the University of North Carolina at Chapel Hill and Fred Hutchinson Cancer Research Center, audio-recorded, and transcribed. Patients perceived a pharmacy-based CRC screening program to be highly acceptable, citing factors such as ease of pharmacy access and avoiding co-pays for an office visit. Some concerns about privacy and coordination with patients' primary care provider tempered acceptability. Trust and positive relationships with providers and pharmacists as well as seamless care across the CRC screening continuum also were viewed as important. Patients viewed pharmacy-based CRC screening as an acceptable option for CRC screening. To improve programmatic success, it will be important to ensure privacy, determine how communication between the pharmacy and the patient's provider will take place, and establish closed-loop care, particularly for patients with abnormal results.

Colon cancer is a common and preventable cancer in the USA and testing for colon cancer can be done at home with a simple test. Yet, many people remain unscreened. This is particularly true for people who may not have ready access to health care, such as those who have limited incomes or resources or who live in rural areas. Most people live close to a pharmacy and visit a pharmacy more frequently than a primary care office. Pharmacies commonly offer services beyond medication dispensing (e.g. flu shot, diabetes management), making them a potential avenue for increasing colon cancer screening. This study aimed to learn what patients think about receiving colon cancer screening through pharmacies. We interviewed 32 people who fit the age-range recommended for colon cancer screening. They were open to, even embracing of, getting screened for colon cancer through a pharmacy, primarily because of its convenience, accessibility, and because it would not require a co-pay. At the same time, they emphasized the need for privacy and coordination with their primary care provider. We concluded that colon cancer screening in pharmacies is potentially a good option for people, provided they have privacy and that their primary care providers are informed.

Everyday discrimination and cancer metaphor preferences: The mediating effects of needs for personal significance and cognitive closure.

Metaphors are often used to describe cancer experiences (e.g., battle, journey). Few studies explore how social threats (e.g., discrimination) shape metaphor preferences. We examined the relationship between discrimination and preferences for cancer battle metaphors (i.e., concrete, action-based) versus journey metaphors (i.e., open-ended, reflective) and mediating effects of needs for personal significance and cognitive closure. We also stratified the analysis when discrimination was/was not attributed to race and by racial/ethnic group. Four-hundred twenty-seven U.S. participants completed an online survey. Items included everyday discrimination, need for personal significance, need for cognitive closure, and preference for cancer scenarios using battle or journey metaphors. Multigroup structural equation modeling examined: serial mediation (i.e., discrimination predicting metaphor preference via needs for personal significance and cognitive closure) stratified by discrimination attribution; and single mediation (i.e., discrimination predicting need for cognitive closure via need for personal significance) stratified by racial/ethnic group. Discrimination was associated with battle metaphor preferences through serial mediation when discrimination was not attributed to race (ß = 0.02, 95% CI [0.01,0.05]). Discrimination was directly associated with journey metaphor preferences (ß = -0.20, 95% CI [-0.37,-0.06]) and the serial mediation was nonsignificant when discrimination was attributed to race. The single mediation model varied across racial/ethnic groups and was strongest for Non-Hispanic White participants (ß = 0.17, 95% CI [0.07,0.30]). Discrimination may shape cancer metaphor preferences through needs for personal significance and cognitive closure, yet these relationships differ based on whether discrimination is attributed to race and racial/ethnic group. Given that the U.S. health system often focuses on battle metaphors when framing cancer treatment and screenings, individuals who prefer journey metaphors (i.e., those who experienced more frequent racial discrimination in the present study) may experience a systematic disadvantage in cancer communication. A more careful consideration of cultural, racial, and ethnic differences in metaphor use may be a crucial step towards reducing cancer disparities.