Engaging communities to inform the development of a diverse cohort of cancer survivors: formative research for the eat move sleep study (EMOVES).

BACKGROUND: There are more than 18 million cancer survivors in the United States. Yet, survivors of color remain under-represented in cancer survivorship research (Saltzman et al. in Contemp Clin Trials Commun 29:100986, 2022; Pang et al. in J Clin Oncol 34:3992-3999, 2016; Lythgoe et al. in Prostate Cancer Prostatic Dis 24:1208-1211, 2021). Our long-term goal is to enroll and follow a cohort of historically under-represented cancer survivors, to better understand modifiable risk factors that influence clinical and quality of life outcomes in these populations. Towards that goal, we describe herein how we applied community-based participatory research approaches to develop inclusive study materials for enrolling such a cohort. METHODS: We implemented community engagement strategies to inform and enhance the study website and recruitment materials for this cohort including: hiring a dedicated engagement coordinator/community health educator as a member of our team; working with the Helen Diller Family Comprehensive Cancer Center Office of Community Engagement (OCE) and Community Advisory Board members; presenting our educational, research, and study recruitment materials at community events; and establishing a community advisory group specifically for the study (4 individuals). In parallel with these efforts, 20 semi-structured user testing interviews were conducted with diverse cancer survivors to inform the look, feel, and usability of the study website. RESULTS: Engagement with community members was a powerful and important approach for this study's development. Feedback was solicited and used to inform decisions regarding the study name (eat move sleep, EMOVES), logo, study website content and imagery, and recruitment materials. Based on community feedback, we developed additional educational materials on healthy groceries and portion size in multiple languages and created a study video. CONCLUSIONS: Including an engagement coordinator as a permanent team member, partnering with the institutional community outreach and engagement resources (i.e., OCE), and allocating dedicated time and financial support for cultivating relationships with stakeholders outside the university were critical to the development of the study website and materials. Our community guided strategies will be tested as we conduct enrollment through community advisor networks and via the state cancer registry.

Under-represented racial and ethnic populations are diagnosed with and die from cancer at higher rates than white Americans but are less likely to be included in research studies. This has resulted in limited data on these populations, especially regarding cancer survivorship and lifestyle factors such as diet, exercise, and sleep. Our aim was to develop inclusive and appealing study materials for enrolling a diverse cancer survivorship cohort by integrating a community engagement coordinator/health educator into the research team and collaborating with our cancer center's office of community engagement community advisory board. An additional bridge was developed between community partners and the research team by establishing a community advisory board specifically for the study. We also conducted 20 user testing interviews with cancer survivors and community stakeholders to inform the look, feel, and usability of the study website during development. Our community partnerships and interviews assisted with decisions on our study name, Eat Move Sleep Study (EMOVES), logo, redesigning the study website, and study format. Our partners also provided guidance that highlighted community need and development of new educational materials for healthy diet (postcard sized grocery list on healthy eating) and a video-based recruitment tool for the study. Incorporation of an engagement coordinator into the research team, building an ongoing relationship with our cancer center's office of community engagement, and adding community advisors onto our study team has greatly impacted our study approach and design.

Ten-year work burden after prostate cancer treatment.

INTRODUCTION: We aim to characterize the magnitude of the work burden (weeks off from work) associated with prostate cancer (PCa) treatment over a 10-year period after PCa diagnosis and identify those at greatest risk. MATERIALS AND METHODS: We identified men diagnosed with PCa treated with radical prostatectomy, radiation therapy, or active surveillance/watchful waiting within CaPSURE. Patients self-reported work burden and SF36 general health scores via surveys before and 1,3,5, and 10 years after treatment. Using multivariate repeated measures generalized estimating equation modeling we examined the association between primary treatment with risk of any work weeks lost due to care. RESULTS: In total, 6693 men were included. The majority were White (81%, 5% Black, and 14% Other) with CAPRA low- (60%) or intermediate-risk (32%) disease and underwent surgery (62%) compared to 29% radiation and 9% active surveillance. Compared to other treatments, surgical patients were more likely to report greater than 7 days off work in the first year, with relatively less time off over time. Black men (RR 0.64, 95% CI 0.54-0.77) and those undergoing radiation (vs. surgery, RR 0.46, 95% CI 0.41-0.51) were less likely to report time off from work over time. Mean baseline GH score (73 [SD 18]) was similar between race and treatment groups, and stable over time. CONCLUSIONS: The work burden of cancer care continued up to 10 years after treatment and varied across racial groups and primary treatment groups, highlighting the multifactorial nature of this issue and the call to leverage greater resources for those at greatest risk.

The Impact of Patient-Physician Racial and Gender Concordance on Patient Satisfaction with Outpatient Clinic Visits.

BACKGROUND: Patient and provider race and gender concordance (patient and physician identify as the same race/ethnicity or gender) may impact patient experience and satisfaction. OBJECTIVE: We sought to examine how patient and physician racial and gender concordance effect patient satisfaction with outpatient clinical encounters. Furthermore, we examined factors that changed satisfaction among concordant and discordant dyads. DESIGN: Consumer Assessment of Healthcare Provider and Systems (CAHPS) Patient Satisfaction Survey Scores were collected from outpatient clinical encounters between January 2017 and January 2019 at the University of California, San Francisco. PARTICIPANTS: Patients who were seen in the eligible time period, who voluntarily provided physician satisfaction scores. Providers with fewer than 30 reviews and encounters with missing data were excluded. MAIN MEASURES: Primary outcome was rate of top satisfaction score. The provider score (1-10 scale) was dichotomized as "top score (9-10)" and "low scores (<9)." KEY RESULTS: A total of 77,543 evaluations met inclusion criteria. Most patients identified as White (73.5%) and female (55.4%) with a median age of 60 (IQR 45, 70). Compared to White patients, Asian patients were less likely to give a top score even when controlling for racial concordance (OR: 0.67; CI 0.63-0.714). Telehealth was associated with increased odds of a top score relative to in-person visits (OR 1.25; CI 1.07-1.48). The odds of a top score decreased by 11% in racially discordant dyads. CONCLUSIONS: Racial concordance, particularly among older, White, male patients, is a nonmodifiable predictor of patient satisfaction. Physicians of color are at a disadvantage, as they receive lower patient satisfaction scores, even in race concordant pairs, with Asian physicians seeing Asian patients receiving the lowest scores. Patient satisfaction data is likely an inappropriate means of determining physician incentives as such may perpetuate racial and gender disadvantages.

Best Current Practice and Research Priorities in Active Surveillance for Prostate Cancer-A Report of a Movember International Consensus Meeting.

BACKGROUND: Active surveillance (AS) is recommended for low-risk and some intermediate-risk prostate cancer. Uptake and practice of AS vary significantly across different settings, as does the experience of surveillance-from which tests are offered, and to the levels of psychological support. OBJECTIVE: To explore the current best practice and determine the most important research priorities in AS for prostate cancer. DESIGN, SETTING, AND PARTICIPANTS: A formal consensus process was followed, with an international expert panel of purposively sampled participants across a range of health care professionals and researchers, and those with lived experience of prostate cancer. Statements regarding the practice of AS and potential research priorities spanning the patient journey from surveillance to initiating treatment were developed. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Panel members scored each statement on a Likert scale. The group median score and measure of consensus were presented to participants prior to discussion and rescoring at panel meetings. Current best practice and future research priorities were identified, agreed upon, and finally ranked by panel members. RESULTS AND LIMITATIONS: There was consensus agreement that best practice includes the use of high-quality magnetic resonance imaging (MRI), which allows digital rectal examination (DRE) to be omitted, that repeat standard biopsy can be omitted when MRI and prostate-specific antigen (PSA) kinetics are stable, and that changes in PSA or DRE should prompt MRI ± biopsy rather than immediate active treatment. The highest ranked research priority was a dynamic, risk-adjusted AS approach, reducing testing for those at the least risk of progression. Improving the tests used in surveillance, ensuring equity of access and experience across different patients and settings, and improving information and communication between and within clinicians and patients were also high priorities. Limitations include the use of a limited number of panel members for practical reasons. CONCLUSIONS: The current best practice in AS includes the use of high-quality MRI to avoid DRE and as the first assessment for changes in PSA, with omission of repeat standard biopsy when PSA and MRI are stable. Development of a robust, dynamic, risk-adapted approach to surveillance is the highest research priority in AS for prostate cancer. PATIENT SUMMARY: A diverse group of experts in active surveillance, including a broad range of health care professionals and researchers and those with lived experience of prostate cancer, agreed that best practice includes the use of high-quality magnetic resonance imaging, which can allow digital rectal examination and some biopsies to be omitted. The highest research priority in active surveillance research was identified as the development of a dynamic, risk-adjusted approach.

Opportunities and challenges in discussing racism during primary care visits.

OBJECTIVE: To understand how patients and primary care practitioners (PCPs) discuss racism and their perspectives on having these conversations during primary care visits. DATA SOURCES/STUDY SETTING: We conducted semi-structured interviews from September 2020-March 2021 at a Federally Qualified Health Center in the San Francisco Bay Area. STUDY DESIGN: We conducted an inductive qualitative descriptive pilot study using one-on-one, semi-structured interviews with 5 members of a Patient Advisory Council and 10 internal medicine PCPs. DATA COLLECTION/EXTRACTION METHODS: Interviews were conducted via video conferencing, recorded, and transcribed. An iterative analytic process was used to thematically assess participants' experiences and perspectives and identify key themes. PRINCIPAL FINDINGS: Patients and PCPs identified benefits from engaging in conversations about racism during primary care visits and noted challenges and concerns. Patients and PCPs highlighted strategies to advance communication about racism in primary care. CONCLUSIONS: Initiating conversations about racism with patients in primary care can be meaningful, but also has risks. More research is needed for deeper exploration of patients' perspectives and development of trainings. Improving how PCPs communicate with patients about racism represents an opportunity to advance antiracism in medicine and improve health outcomes for individuals who have historically been poorly served by our health care system.

Addressing the challenges of conducting community-engaged research during COVID-19: Rapid development and evaluation of a COVID-19 Research Patient and Community Advisory Board (PCAB).

Introduction: We created a COVID-19 Research Patient and Community Advisory Board (PCAB) to provide patient and community input into clinical and translational research studies. The purpose of this article is to describe the PCAB creation, implementation, and evaluation. Methods: We identified PCAB members who had participated in previous stakeholder engaged activities at our institution and invited their participation. We created a systematic consultation process where researchers could submit plain language research summaries and questions for the PCAB. A facilitated 1-hour virtual consultation was then held where PCAB members provided feedback. We assessed satisfaction of PCAB members and researchers who received consultations using surveys. We also reviewed video recordings of PCAB consultations and reflections from team meetings to identify key lessons learned. Results: Twenty-seven PCAB members took part in 23 consultation sessions. Twenty-two completed an evaluation survey (81% response rate). Most members agreed or strongly agreed their opinions were valued (86%), it was a productive use of time (86%) and were satisfied (86%). Nineteen researchers completed an evaluation survey (83% response rate). Researchers reported positive experiences of working with the PCAB. Additional insights include limited funding in COVID-19 research for equitable community engagement, deficiencies in researcher communication skills, and a lack of cultural humility incorporated into study activities. Conclusions: PCAB members provided recommendations that maximized the patient-centeredness and health equity focus of COVID-19 research. The detailed description of the process of developing, implementing, and evaluating our PCAB can be used as a template for others wishing to replicate this engagement model.

Navigation programs relevant for African American men with prostate cancer: a scoping review protocol.

BACKGROUND: The excess incidence and mortality due to prostate cancer that impacts African American men constitutes the largest of all cancer disparities. Patient navigation is a patient-centered healthcare system intervention to eliminate barriers to timely, high-quality care across the cancer continuum and improves health outcomes among vulnerable patients. However, little is known regarding the extent to which navigation programs include cultural humility to address prostate cancer disparities among African American men. We present a scoping review protocol of an in-depth examination of navigation programs in prostate cancer care-including navigation activities/procedures, training, and management-with a special focus on cultural context and humility for African American men to achieve health equity. METHODS: We will conduct comprehensive searches of the literature in PubMed, Embase, Web of Science, and CINAHL Complete, using keywords and index terms (Mesh and Emtree) within the three main themes: prostate cancer, patient navigation, and African American men. We will also conduct a search of the gray literature, hand-searching, and reviewing references of included papers and conference abstracts. In a two-phase approach, two authors will independently screen titles and abstracts, and full-text based on inclusion/exclusion criteria. All study designs will be included that present detailed data about the elements of navigation programs, including intervention content, navigator training, and/or management. Data will be extracted from included studies, and review findings will be synthesized and summarized. DISCUSSION: A scoping review focused on cultural humility in patient navigation within the context of eliminating disparities in PCa care among African American men does not yet exist. This review will synthesize existing evidence of patient navigation programs for African American prostate cancer patients and the inclusion of cultural humility. Results will inform the development and implementation of future programs to meet the unique needs of vulnerable prostate cancer patients in safety net settings. SYSTEMATIC REVIEW REGISTRATION: PROSPERO 2021 CRD42021221412.

Mobile Clinical Trial Matching Technology in Medical Oncology Clinic: A Pilot Feasibility Study.

PURPOSE: The internet is a common source of health information for patients and can be leveraged to provide patient-facing clinical trial information. This pilot study integrated an online prostate cancer clinical trial matching technology, called Trial Library (TL), in an academic medical oncology clinic from February 2019 to April 2021. PATIENTS AND METHODS: This is a single-arm interventional pilot study among patients with a known prostate cancer diagnosis. Participants were given access to TL before seeing a provider. The primary and secondary study end points were the overall satisfaction with TL and the proportion of participant-initiated clinical trial discussion with providers after exposure to TL, respectively. The null hypothesis or true satisfaction rate (acceptability) was tested against a one-sided alternative and was rejected if 29 or more satisfactions were observed. RESULTS: Among 272 patients approached, 66 provided informed consent to participate in the study. The mean age was 70.8 years (standard deviation = 7.9). The majority of participants were White (82%) and had metastases present at the time of enrollment (65%). The baseline clinical trial discussion rate ascertained via electronic medical record review was 28%. After accessing TL, a significantly larger proportion of participants (48.5%) discussed clinical trials during the clinic visit (P = .007), half of which were patient-initiated. The majority of participants indicated that TL increased their interest in clinical trials (68.2%); however, satisfaction/extreme satisfaction with the technology was 38%. CONCLUSION: Access to TL resulted in a significant increase in patient-initiated discussions regarding clinical trials and an increase in interest in clinical trial participation although these data do not address if this resulted in increased accrual to clinical trials. The satisfaction rate did not meet the target to reject the null hypothesis, suggesting the need for iterative design of patient-facing health information.

From Cancer Epidemiology to Policy and Practice: the Role of a Comprehensive Cancer Center.

Purpose of Review: Cancer incidence and mortality are decreasing, but inequities in outcomes persist. This paper describes the San Francisco Cancer Initiative (SF CAN) as a model for the systematic application of epidemiological evidence to reduce the cancer burden and associated inequities. Recent Findings: SF CAN is a multi-institutional implementation of existing evidence on the prevention and early detection of five common cancers (i.e., breast, prostate, colorectal, liver, and lung/tobacco-related cancers) accounting for 50% of cancer deaths in San Francisco. Five Task Forces follow individual logic models designating inputs, outputs, and outcomes. We describe the progress made and the challenges faced by each Task Force after 5 years of activity. Summary: SF CAN is a model for how the nation's Comprehensive Cancer Centers are ideally positioned to leverage cancer epidemiology for evidence-based initiatives that, along with genuine community engagement and multiple stakeholders, can reduce the population burden of cancer.

A Cross-Sectional Analysis of Barriers Associated With Non-Attendance at a Urology Telehealth Clinic in a Safety-Net Hospital.

OBJECTIVE: To analyze the factors associated with non-attendance at a urology telehealth clinic in a large urban safety-net hospital after institutional-mandated transition to telehealth due to COVID-19. METHODS: We identified all encounters scheduled for telehealth after March 17, 2020 and in the subsequent 8 weeks. Logistic regression was used to identify factors associated with attendance. RESULTS: In total there were 322 telehealth encounters, 228 (70.8%) of which were attended and 94 (29.2%) that were not attended. Racial/ethnic minorities accounted for 175 (77.0%) of attended and 73 (76.7%) of non-attended encounters. On multivariable regression, single/divorced/widowed (odds ratio [OR] 2.36, 95% confidence interval [CI] 1.26-4.43), current substance use disorder (OR 5.33, 95% CI 2.04-13.98), and being scheduled for a new patient appointment (OR 1.81, 95% CI 1.04-3.13) were associated with higher odds of not attending a telehealth encounter. Race/ethnicity, primary language, and country of birth were not associated with odds of attendance. CONCLUSION: Our findings identify several social factors (social support, substance use) associated with non-attendance at outpatient telehealth urology encounters at an urban safety-net hospital during the early stages of the COVID-19 pandemic. These barriers may have a greater impact specifically within a safety-net healthcare system and will inform equitable provision of urology telehealth programs in the future FUNDING: Goldberg-Benioff Endowed Professorship in Cancer Biology. The sponsors had no involvement with this study.

Access and Representation: A Narrative Review of the Disparities in Access to Clinical Trials and Precision Oncology in Black men with Prostate Cancer.

OBJECTIVE: To provide commentary on the disparities in access to clinical trials and precision oncology specific to Black men with Prostate Cancer (PCa) in the United States and lend a general framework to aid in closing these gaps. MATERIALS AND METHODS: The ideas, commentaries and data presented in this narrative review were synthesized by utilizing qualitative and quantitative studies, reviews, and randomized control trials performed between 2010 and 2021. We searched PubMed using the key words "Medicaid", "Medicare", "clinical trials", "African Americans", "Black", "underrepresentation", "access", "Prostate Cancer", "minority recruitment", "racial disparities", "disparity", "genomics", "biomarkers", "diagnostic" "prognostic", "validation", "precision medicine", and "precision oncology" to identify important themes, trends and data described in the current review. Keywords were used alone and combination with both "AND" and "OR" terms. RESULTS: Black men with prostate cancer (PCa) in the United States have earlier onset of disease, present with more advanced stages, and worse prostate cancer-specific survival than their White counterparts. Potential causative factors vary from disparities in health care access to differences in tumor immunobiology and genomics along with disparate screening rates, management patterns and underrepresentation in clinical and translational research such as clinical trials and precision oncology. CONCLUSION: To avoid increasing the racial disparity in PCa outcomes for Black men, we must increase inclusion of Black men into precision oncology and clinical trials, using multilevel change. Underrepresentation in clinical and translational research may potentiate poorly validated risk calculators and biomarkers, leading to poor treatment decisions in high-risk populations. Relevant actions include funding to include minority-serving institutions as recruitment sites, and inclusion of evidence based recruitment methods in funded research to increase Black representation in clinical trials and translational research.

Prostate cancer patients' self-reported participation in research: an examination of racial/ethnic disparities.

PURPOSE: We examined prostate cancer patients' participation in research and associated factors by race/ethnicity in a multiethnic sample. METHODS: Men with a new diagnosis of prostate cancer were identified through the California Cancer Registry. Patients completed a cross-sectional telephone interview in English, Spanish, Cantonese or Mandarin. Multivariable logistic regression models, stratified by race/ethnicity, estimated the associations of patient demographic and health characteristics with participation in (1) any research, (2) behavioral research, and (3) biological/clinical research. RESULTS: We included 855 prostate cancer patients: African American (19%), Asian American (15%), Latino (24%), and White (42%). In the overall model of participation in any research, African American men (Odds Ratio (OR) = 2.54, 95% CI 1.63-3.94), and those with two or more comorbidities (OR = 2.20, 95% CI 1.27-3.80) were more likely to report participation. Men 65 years old and older (OR = 0.65, 95% CI 0.47-0.91), those who were married or living with a partner (OR = 0.67, 95% CI 0.45-0.98), and those who completed the interview in Spanish (OR = 0.36, 95% CI 0.15-0.85) were less likely to report participating in any research. Stratified analyses identified racial/ethnic-specific sociodemographic characteristics associated with lower research participation, including Spanish or Chinese language, older age, and lower education. CONCLUSION: African American prostate cancer patients reported higher research participation than all other groups. However, recruitment efforts are still needed to overcome barriers to participation for Spanish and Chinese speakers, and barriers among older adults and those with lower education levels.

Post-Diagnostic Dietary and Lifestyle Factors and Prostate Cancer Recurrence, Progression, and Mortality.

PURPOSE OF REVIEW: This study aimed to summarize evidence published between 1999 and June 2020 examining diet and lifestyle after prostate cancer (PC) diagnosis in relation to risk of biochemical recurrence, PC progression, and PC-specific mortality. RECENT FINDINGS: Secondary prevention is an important research area in cancer survivorship. A growing number of studies have reported associations between post-diagnostic modifiable behaviors and risk of PC outcomes. Evidence on modifiable lifestyle factors and PC remains limited. Where multiple studies exist, findings are often mixed. However, studies consistently suggest that smoking and consumption of whole milk/high-fat dairy are associated with higher risk of PC recurrence and mortality. In addition, physical activity and ½ to 1 glass of red wine/day have been associated with lower risk of recurrence and PC-specific mortality. Greater inclusion of racially/ethnically diverse groups in future research is necessary to understand these relationships in populations most impacted by adverse PC outcomes.

Defining and Measuring Adherence in Observational Studies Assessing Outcomes of Real-world Active Surveillance for Prostate Cancer: A Systematic Review.

CONTEXT: Evidence-based guidelines for active surveillance (AS), a treatment option for men with low-risk prostate cancer, recommend regular follow-up at periodic intervals to monitor disease progression. However, gaps in monitoring can lead to delayed detection of cancer progression, leading to a missed window of curability. OBJECTIVE: We aimed to identify the extent to which real-world observational studies reported adherence to monitoring protocols among prostate cancer patients on AS. When reported, we sought to characterize definitions of adherence. EVIDENCE ACQUISITION: We systematically reviewed observational studies assessing outcomes of prostate cancer patients on AS, published before March 22, 2019 in PubMed, Embase, and CENTRAL. Adherence definitions were considered time bound if they included prespecified time and binary if adherence was assessed but did not specify a time interval. We assessed study quality using the Strengthening the Reporting of Observational Studies in Epidemiology checklist. EVIDENCE SYNTHESIS: Forty-five studies met our inclusion criteria. Eleven studies did not report any data on adherence to AS protocols. Twenty-five studies did not explicitly measure adherence, but provided relevant data (eg, number of patients who received a repeat biopsy). Six studies reported adherence using a time-bound definition, while three studies used a binary definition. Twenty-three studies provided information on patients lost to follow-up. CONCLUSIONS: Most studies reporting outcomes of patients on AS did not measure or report adherence. When reported, adherence was often not time specific. As some AS patients will benefit from maintaining a window of curability, clinical practices and future studies should track and report adherence and associated factors. PATIENT SUMMARY: We reviewed real-world observational studies examining outcomes of prostate cancer patients on active surveillance. Most studies did not clearly define or report adherence to monitoring protocols, which is important to consider for appropriate disease management.

Cancer health disparities in racial/ethnic minorities in the United States.

There are well-established disparities in cancer incidence and outcomes by race/ethnicity that result from the interplay between structural, socioeconomic, socio-environmental, behavioural and biological factors. However, large research studies designed to investigate factors contributing to cancer aetiology and progression have mainly focused on populations of European origin. The limitations in clinicopathological and genetic data, as well as the reduced availability of biospecimens from diverse populations, contribute to the knowledge gap and have the potential to widen cancer health disparities. In this review, we summarise reported disparities and associated factors in the United States of America (USA) for the most common cancers (breast, prostate, lung and colon), and for a subset of other cancers that highlight the complexity of disparities (gastric, liver, pancreas and leukaemia). We focus on populations commonly identified and referred to as racial/ethnic minorities in the USA-African Americans/Blacks, American Indians and Alaska Natives, Asians, Native Hawaiians/other Pacific Islanders and Hispanics/Latinos. We conclude that even though substantial progress has been made in understanding the factors underlying cancer health disparities, marked inequities persist. Additional efforts are needed to include participants from diverse populations in the research of cancer aetiology, biology and treatment. Furthermore, to eliminate cancer health disparities, it will be necessary to facilitate access to, and utilisation of, health services to all individuals, and to address structural inequities, including racism, that disproportionally affect racial/ethnic minorities in the USA.

Earning the Trust of African American Communities to Increase Representation in Dementia Research.

Black/African American populations are underrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to both historical and contemporary racism. Building on the Ford framework, the objective of our study was to examine factors that influence participation in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected during January 2019 and March 2020 from 10 focus groups with African American older adults (n=91), 5 focus groups with caregivers (n=44), and interviews with administrators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/deductive content analysis was used to identify themes. The results identified an overall tension between distrust of researchers and a compelling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American communities becomes a systemic endeavor, with academic, state, and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research.

"Can you hear me now?": postoperative patient-initiated communication with providers.

OBJECTIVES: Surgical patients often leave the hospital with many questions and concerns after their surgery and will contact their providers to get answers. The growth of patient-provider communication (PPC) technologies allows for many new opportunities to study postoperative patient-initiated communication. We aimed to characterize a growing body of literature on postoperative patient-initiated communication. STUDY DESIGN: Review. METHODS: A scoping review methodology was used to identify 17 studies analyzing patient-initiated communication in the postoperative period and to characterize key results and areas of investigation in the literature. Patient-initiated communication in the postoperative period was defined as any communication initiated by the patient after discharge. RESULTS: The majority of studies were published between 2014 and 2018 (82.4%). Telephone calls were the most common type of medium investigated (11 studies; 64.7%), followed by secure messaging (2 studies; 11.8%). Patients most commonly initiated contact regarding study results, medications, and wounds. Common areas of investigation included communication timing and sociodemographic associations. CONCLUSIONS: As health systems adopt new technologies for PPC, understanding how and why patients initiate contact with providers postoperatively can inform efforts to strengthen PPC broadly. Moreover, research on sociodemographic variation in communication patterns after surgery can help address communication gaps that patient groups may experience. Future research can build upon this work to improve patient outcomes and increase clinic efficiency.

Ethnographic investigation of patient-provider communication among African American men newly diagnosed with prostate cancer: a study protocol.

INTRODUCTION: In the USA, African American men bear a disproportionate burden of prostate cancer (PCa) compared with all other groups, having a higher incidence and mortality, poorer quality of life and higher dissatisfaction with care. They are also less likely to receive guideline-concordant treatment (eg, undertreatment of aggressive disease). Inadequate patient-provider communication contributes to suboptimal care, which can be exacerbated by patients' limited health literacy, providers' lack of communication skills and time constraints in low-resource, safety net settings. This study is designed to examine the communication experiences of African American patients with PCa as they undertake treatment decision-making. METHODS AND ANALYSIS: Using an ethnographic approach, we will follow 25 African American men newly diagnosed with PCa at two public hospitals, from diagnosis through treatment decision. Data sources include: (1) audio-recorded clinic observations during urology, radiation oncology, medical oncology and primary care visits, (2) field notes from clinic observations, (3) patient surveys after clinic visits, (4) two in-depth patient interviews, (5) a provider survey, and (6) in-depth interviews with providers. We will explore patients' understanding of their diagnoses and treatment options, sources of support in decision-making, patient-provider communication and treatment decision-making processes. Audio-recorded observations and interviews will be transcribed verbatim. An iterative process of coding and team discussions will be used to thematically analyse patients' experiences and providers' perspectives, and to refine codes and identify key themes. Descriptive statistics will summarise survey data. ETHICS AND DISSEMINATION: To our knowledge, this is the first study to examine in-depth patient-provider communication among African American patients with PCa. For a population as marginalised as African American men, an ethnographic approach allows for explication of complex sociocultural and contextual influences on healthcare processes and outcomes. Study findings will inform the development of interventions and initiatives that promote patient-centred communication, shared decision-making and guideline-concordant care. This study was approved by the University of California San Francisco and the Alameda Health System Institutional Review Boards.

Rural cancer survivors' health information needs post-treatment.

OBJECTIVE: This study describes the most common cancer-related health information needs among rural cancer survivors and characteristics associated with reporting more information needs. METHODS: Rural breast, prostate, and colorectal cancer survivors, two to five years post-diagnosis, identified from an institutional cancer registry, completed a mailed/telephone-administered survey. Respondents were asked about 23 health information needs in eight domains (tests and treatment, side effects and symptoms, health promotion, fertility, interpersonal, occupational, emotional, and insurance). Poisson regression models were used to assess relationships between number of health information needs and demographic and cancer characteristics. RESULTS: Participants (n = 170) reported an average of four health information needs, with the most common domains being: side effects and symptoms (58 %), health promotion (54 %), and tests and treatment (41 %). Participants who were younger (compared to 5-year increase, rate ratio [RR] = 1.11, 95 % CI = 1.02-1.21), ethnic minority (RR = 1.89, 95 % CI = 1.17-3.06), less educated (RR = 1.49, 95 % CI = 1.00-2.23), and financially stressed (RR = 1.87, 95 % CI = 1.25-2.81) had a greater number of information needs. CONCLUSIONS: Younger, ethnic minority, less educated, and financially strained rural survivors have the greatest need for informational support. PRACTICE IMPLICATIONS: The provision of health information for rural cancer survivors should consider type of cancer, treatments received, and sociocultural differences to tailor information provided.