Electronic Coding for Abnormal Fecal Immunochemical Test Is Associated With Increased Colonoscopy Completion.

INTRODUCTION: We examined the utility of the International Classification of Disease, Tenth Revision (ICD-10) code, R19.5, for a positive or abnormal fecal immunochemical test (FIT) and its association with colonoscopy completion. METHODS: We identified all patients in a safety-net health system who underwent FITs from January 1, 2020, to August 31, 2021, and extracted the FIT date, FIT result, and ICD-10 code (R19.5) and colonoscopy procedures for each patient. RESULTS: FIT-positive patients who had an R19.5 designation within 90 days (n = 383) were significantly more likely than all other FIT-positive patients (n = 273) to complete a colonoscopy within 6 months (40.9% vs 16.8%, P <0.001). DISCUSSION: We found that less than two-thirds of patients had an ICD-10 code designated in their chart within 30 days of an abnormal FIT. When coding occurred in a timely manner, patients were more likely to complete their colonoscopy within 6 months.

Extent of Follow-Up on Abnormal Cancer Screening in Multiple California Public Hospital Systems: A Retrospective Review.

BACKGROUND: Inequitable follow-up of abnormal cancer screening tests may contribute to racial/ethnic disparities in colon and breast cancer outcomes. However, few multi-site studies have examined follow-up of abnormal cancer screening tests and it is unknown if racial/ethnic disparities exist. OBJECTIVE: This report describes patterns of performance on follow-up of abnormal colon and breast cancer screening tests and explores the extent to which racial/ethnic disparities exist in public hospital systems. DESIGN: We conducted a retrospective cohort study using data from five California public hospital systems. We used multivariable robust Poisson regression analyses to examine whether patient-level factors or site predicted receipt of follow-up test. MAIN MEASURES: Using data from five public hospital systems between July 2015 and June 2017, we assessed follow-up of two screening results: (1) colonoscopy after positive fecal immunochemical tests (FIT) and (2) tissue biopsy within 21 days after a BIRADS 4/5 mammogram. KEY RESULTS: Of 4132 abnormal FITs, 1736 (42%) received a follow-up colonoscopy. Older age, Medicaid insurance, lack of insurance, English language, and site were negatively associated with follow-up colonoscopy, while Hispanic ethnicity and Asian race were positively associated with follow-up colonoscopy. Of 1702 BIRADS 4/5 mammograms, 1082 (64%) received a timely biopsy; only site was associated with timely follow-up biopsy. CONCLUSION: Despite the vulnerabilities of public-hospital-system patients, follow-up of abnormal cancer screening tests occurs at rates similar to that of patients in other healthcare settings, with colon cancer screening test follow-up occurring at lower rates than follow-up of breast cancer screening tests. Site-level factors have larger, more consistent impact on follow-up rates than patient sociodemographic traits. Resources are needed to identify health system-level factors, such as test follow-up processes or data infrastructure, that improve abnormal cancer screening test follow-up so that effective health system-level interventions can be evaluated and disseminated.

Identifying the Needs of Primary Care Providers Caring for Breast and Colon Cancer Survivors in the Safety-Net: a Qualitative Study.

As the number of cancer survivors continues to increase and given the shortage of oncology clinicians in safety net health care settings, primary care providers (PCPs) in these settings will increasingly provide cancer survivorship care. In order to ensure equitable care for low-income and underserved breast and colon cancer survivors, it is essential to understand the safety-net PCPs' perspective. We conducted semi-structured, in-depth qualitative interviews with 11 PCPs working in a safety-net health care system to identify their needs in caring for cancer survivors. Interviews were audio-recorded and professionally transcribed. Two coders independently coded the interviews and conducted regular meetings until we reached consensus on the results. Analysis was based in grounded theory and performed using the constant comparative method. Thematic analysis identified six themes as follows: (1) Cancer survivorship care can be integrated with the whole person and chronic disease care management that occurs in primary care; (2) PCPs' perceptions regarding patients' survivorship care needs and their confidence in meeting those needs; (3) preference for a shared care model; (4) coordination of care; (5) PCPs' need for survivorship care education and training; and (6) unique issues involved in the care of older cancer survivors. PCPs in the safety-net believe that providing comprehensive survivorship care requires coordination of care through the cancer continuum. Tools like checklists, electronic health records-based communication, and convenient electronic consultations with cancer specialists would enhance the quality of survivorship care. Respondents advocate the inclusion of survivorship care education in medical education. The continuity of care with PCPs means that they play a particularly important role in the care of older cancer survivors.

Cancer Risk Behaviors, Cancer Beliefs, and Health Information Seeking Among Under-Represented Populations in San Francisco: Differences by Sexual Orientation and Gender Identity.

Purpose: Sexual and gender minority (SGM) individuals in the United States are at increased risk of cancer compared to the non-SGM population. Understanding how SGM persons perceive cancer risk and their practices and preferences for accessing health information is key for improving the preventive and health care services they receive. Methods: In this cross-sectional study, we analyzed data from the San Francisco Health Information National Trends Survey. SGM individuals were identified by self-report. Differences in cancer risk factors, cancer beliefs, and health information seeking were evaluated by SGM status using multivariable logistic regression models. Results: Out of 1027 participants, 130 (13%) reported being SGM individuals. Current smoking (odds ratio [OR]=1.93, 95% confidence interval [CI]=1.24-3.01) and alcohol use (OR=1.69, 95% CI=1.10-2.59) were more common among SGM persons than among non-SGM persons. No differences by SGM status were observed in health information seeking behaviors, preferences, and cancer beliefs, but SGM participants reported significantly higher odds of feeling frustrated (OR=1.78, 95% CI=1.20-2.64) and having concerns about the quality of the information (OR=1.54, 95% CI=1.03-2.31) during their most recent health information search. Conclusions: Intervention efforts aimed at SGM individuals with current use of tobacco and/or alcohol should be expanded. SGM communities also need improved access to consistent, reliable, and accurate sources of health information. Their increased frustration when seeking health information and concerns about the quality of the information they find have important implications for SGM health and care, and the drivers of these differences merit further evaluation.

Preferences and Perceptions of Medical Error Disclosure Among Marginalized Populations: A Narrative Review.

BACKGROUND: Disclosure of medical errors, in which a health care provider informs the patient/family of the error and takes responsibility, is an ethical imperative. Little is known about how medical error disclosure preferences or perceptions may vary for patients who are people of color, are older, or have lower educational attainment. METHODS: The researchers conducted a narrative review on medical errors and disclosure. Included were studies in high-income countries that included a predominantly marginalized population, defined by any one of the following: older age adults (mean age > 65 years); low educational attainment (> 55% of participants with less than a high school education); and/or racial/ethnic minority (< 55% of participants identifying as non-Hispanic white for US studies). RESULTS: The literature search yielded 3,050 articles, resulting in 6 studies included for analysis. Four studies used hypothetical vignettes; 1 used focus groups, and 1 used a survey. Three studies met the marginalized population criteria based on education; 3 met the criteria based on race/ethnicity. No study met the inclusion criteria for age. All 6 articles examined patient preferences for disclosure, and 2 studies also examined patient perceptions of disclosure. Overall, participants preferred that medical errors be disclosed to them. Most of the studies lacked multiple regression analysis to investigate differences in disclosure preferences by race/ethnicity, age, and education. CONCLUSION: Participants from marginalized populations may have similar disclosure preferences to white and highly educated participants. Future studies should aim to examine differences in error disclosure preferences among patients who have experienced adverse events across race/ethnicity, educational attainment, and age.

Exploring factors associated with hepatitis B screening in a multilingual and diverse population.

BACKGROUND: Racial/ethnic minorities bear a disproportionate burden of hepatitis B virus (HBV) infection and disease. Disparities in HBV screening contribute to worse outcomes for communities of color. We examined the impact of race/ethnicity, language preference, and having a usual place of care on HBV screening in a multilingual, urban cohort. METHODS: We used questions from the Health Information National Trends Survey and added validated questions about healthcare access and health literacy. We administered this survey in English, Spanish, and Chinese to a selected convenience sample of San Francisco city/county residents in 2017, with pre-specified targets for populations with known cancer disparities: 25% Spanish-speaking, 25% Chinese-speaking, and 25% Black Americans. Using weighted multivariable logistic regression analyses, we assessed how race/ethnicity, language preference, and having a usual place of care impacts self-report of HBV screening. RESULTS: Overall, 1027 participants completed the survey (50% of surveys administered in English, 25% in Spanish, and 25% in Chinese). Only 50% of participants reported HBV screening. In multivariable analysis, Black (OR = 0.20, 95% CI 0.08-0.49), Latinx (OR = 0.33, 95% CI 0.13-0.85), Asian (OR = 0.31, 95% CI 0.10, 0.94), and 'Other' race/ethnicity (OR = 0.17, 95% CI 0.05-0.53) respondents had lower odds of HBV screening compared to non-Hispanic White respondents. Participants who had insurance had increased odds of HBV screening (OR = 2.70, 95% CI 1.48-4.93). CONCLUSIONS: HBV screening disparities persist for Black Americans, Asian Americans, Latinx, and the uninsured. Future studies should explore reasons why current strategies have not been implemented or are not successful, particularly in addressing racial/ethnic and insurance disparities.

Socioeconomic status and colorectal cancer screening behaviors in a vulnerable multiethnic population.

OBJECTIVE: Despite some progress in recent years, colorectal cancer (CRC) screening adherence in the United States is still suboptimal, particularly among disadvantaged groups. In this study, we assessed the association between socioeconomic status (SES) and self-reported screening non-adherence (SNA) in a sample of racial/ethnic minorities living in San Francisco, California. DESIGN/METHODS: A total of 376 participants of the San Francisco version of the Health Information National Trends Survey (SF-HINTS) with ages 50-75 years were included in this cross-sectional study. SNA was defined as not reporting blood stool test within the past year and not reporting sigmoidoscopy/colonoscopy within the past 10 years. Poisson regression models with robust variance estimators were used to evaluate the relation of SES with SNA, adjusting for measured confounders. Results are reported as prevalence ratios (PR) and 95% confidence intervals (95% CI). RESULTS: Overall SNA was 40%. In multivariable models including all respondents, retired participants had significantly lower SNA prevalence than employed participants (PR = 0.46, 95% CI = 0.26 0.83). In stratified analyses by race/ethnicity, Black respondents with less than high school (PR = 1.93, 95% CI = 1.09, 3.43) and those with high school or equivalent (PR = 1.88, 95% CI = 1.16, 3.04) had significantly higher SNA prevalence than those with at least some college. Among non-Hispanic Asian/Pacific Islanders, those disabled had significantly higher prevalence of SNA as compared to employed people (PR = 4.26, 95% CI = 2.11, 8.60). None of the SES indicators were significantly associated to SNA among Hispanics. CONCLUSIONS: Participants with lower SES characteristics were less likely to adhere to CRC screening guidelines and being retired was a predictor of compliance. There was evidence of heterogeneity in associations between SES and CRC screening by race/ethnicity. Life circumstances of retired people could provide insights for designing interventions aimed to improve CRC screening uptake in these priority groups. Future efforts should consider mechanisms underlying differences by race/ethnicity.

A Root Cause Analysis of Barriers to Timely Colonoscopy in California Safety-Net Health Systems.

OBJECTIVES: Safety-net health care systems, serving vulnerable populations, see longer delays to timely colonoscopy after a positive fecal occult blood test (FOBT), which may contribute to existing disparities. We sought to identify root causes of colonoscopy delay after positive FOBT result in the primary care safety net. METHODS: We conducted a multisite root cause analysis of cases of delayed colonoscopy, identifying cases where there was a delay of greater than 6 months in completing or scheduling a follow-up colonoscopy after a positive FOBT. We identified cases across 5 California health systems serving low-income, vulnerable populations. We developed a semistructured interview guide based on precedent work. We conducted telephone individual interviews with primary care providers (PCPs) and patients. We then performed qualitative content analysis of the interviews, using an integrated inductive-deductive analytic approach, to identify themes related to recurrent root causes of colonoscopy delay. RESULTS: We identified 12 unique cases, comprising 5 patient and 11 PCP interviews. Eight patients completed colonoscopy; median time to colonoscopy was 11.0 months (interquartile range, 6.3 months). Three patients had advanced adenomatous findings. Primary care providers highlighted system-level root causes, including inability to track referrals between primary care and gastroenterology, lack of protocols to follow up with patients, lack of electronic medical record interoperability, and lack of time or staffing resources, compelling tremendous additional effort by staff. In contrast, patients' highlighted individual-level root causes included comorbidities, social needs, and misunderstanding the importance of the FOBT. There was a little overlap between PCP and patient-elicited root causes. CONCLUSIONS: Current protocols do not accommodate communication between primary care and gastroenterology. Interventions to address specific barriers identified include improved interoperability between PCP and gastroenterology scheduling systems, protocols to follow-up on incomplete colonoscopies, accommodation for support and transport needs, and patient-friendly education. Interviewing both patients and PCPs leads to richer analysis of the root causes leading to delayed diagnosis of colorectal cancer.

Catalyzing Navigation for Breast Cancer Survivorship (CaNBCS) in Safety-Net Settings: A Mixed Methods Study.

PURPOSE: The current number of breast cancer survivors (BCS) in the United States is approximately 3.8 million, and this number is further expected to increase with improvement in treatments. Survivorship care plans (SCPs) are patient-centered tools that are designed to meet cancer survivors' informational needs about their treatment history, recommended health care, and health maintenance. However, the data on SCP benefits remain uncertain, especially in low-income and racial and ethnic minority cancer survivors. Patient navigation is an effective intervention to improve patient adherence and experience of interdisciplinary breast cancer treatment. OBJECTIVES: This study sought to understand the role of lay patient navigators (LPN) in survivorship care planning for BCS in safety-net settings. METHODS: This study is a mixed methods pilot randomized clinical trial to understand the role of patient navigation in cancer survivorship care planning in a public hospital. We invited BCS who had completed active breast cancer treatment within 5 years. LPNs discussed survivorship care planning and survivorship care-related issues with BCS in the intervention arm over a 6-month intervention period and accompanied patients to their primary care appointment. LPNs also encouraged survivors to discuss health care issues with oncology and primary care providers. The primary objective was to assess BCS' health-related quality of life (HRQOL). The secondary objectives were self-efficacy and implementation. We assessed implementation with 45-60-min semi-structured interviews with 15 BCS recruited from the intervention arm and 60-min focus groups with the oncologists and separately with LPNs. RESULTS: We enrolled 40 patients, 20 randomized to usual care and 20 randomized to LPN navigation. We did not find a statistically significant difference between the two arms in HRQOL. There was also no difference in self-efficacy between the two arms. Qualitative analysis identified implementation barriers to intervention that may have contributed to less effective intervention. IMPLICATIONS FOR CANCER SURVIVORS: Future survivorship care planning interventions need to consider: Cancer survivors' needs and preferences, the need for dedicated resources, and the role of electronic health records in survivorship care plan delivery.

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.

Improving Patient Safety in Public Hospitals: Developing Standard Measures to Track Medical Errors and Process Breakdowns.

OBJECTIVE: The aim of the study was to develop standards for tracking patient safety gaps in ambulatory care in safety net health systems. METHODS: Leaders from five California safety net health systems were invited to participate in a modified Delphi process sponsored by the Safety Promotion Action Research and Knowledge Network (SPARKNet) and the California Safety Net Institute in 2016. During each of the three Delphi rounds, the feasibility and validity of 13 proposed patient safety measures were discussed and prioritized. Surveys and transcripts from the meetings were analyzed to understand the decision-making process. RESULTS: The Delphi process included eight panelists. Consensus was reached to adopt 9 of 13 proposed measures. All 9 measures were unanimously considered valid, but concern was expressed about the feasibility of implementing several of the measures. CONCLUSIONS: Although safety net health systems face high barriers to standardized measurement, our study demonstrates that consensus can be reached on acceptable and feasible methods for tracking patient safety gaps in safety net health systems. If accompanied by the active participation key stakeholder groups, including patients, clinicians, staff, data system professionals, and health system leaders, the consensus measures reported here represent one step toward improving ambulatory patient safety in safety net health systems.

Cancer patient perspectives on survivorship goals from the Smart Patients online community.

BACKGROUND: Cancer impacts individuals' life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients' attitudes toward goal sharing with their cancer care providers. PATIENTS AND METHODS: Semi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes. RESULTS: Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment. CONCLUSION: Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams.

Communicating Critical Information to Cancer Survivors: an Assessment of Survivorship Care Plans in Use in Diverse Healthcare Settings.

Survivorship care plans (SCPs) serve to communicate critical information needed for cancer survivors' long-term follow-up care. The extent to which SCPs are tailored to meet the specific needs of underserved patient populations is understudied. To fill this gap, this study aimed to assess the content and communication appropriateness of SCPs collected from diverse healthcare settings. We analyzed collected SCPs (n = 16) for concordance with Institute of Medicine (IOM) recommendations for SCP content and for communication appropriateness using the Suitability Assessment of Materials (SAM) instrument. All plans failed to incorporate all IOM criteria, with the majority of plans (n = 11) incorporating less than 60% of recommended content. The average reading grade level of all the plans was 14, and only one plan received a superior rating for cultural appropriateness. There is significant variation in the format and content of SCPs used in diverse hospital settings and most plans are not written at an appropriate reading grade level nor tailored for underserved and/or minority patient populations. Co-designing SCPs with diverse patient populations is crucial to ensure that these documents are meeting the needs and preferences of all cancer survivors.

Gaps in Treatment and Surveillance: Head and Neck Cancer Care in a Safety-Net Hospital.

OBJECTIVE: Treatment delays and suboptimal adherence to posttreatment surveillance may adversely affect head and neck cancer (HNC) outcomes. Such challenges can be exacerbated in safety-net settings that struggle with limited resources and serve a disproportionate number of patients vulnerable to gaps in care. This study aims to characterize treatment delays and adherence with posttreatment surveillance in HNC care at an urban tertiary care public hospital in San Francisco. STUDY DESIGN: Retrospective chart review. SETTING: Urban tertiary care public hospital in San Francisco. SUBJECTS AND METHODS: We identified all cases of HNC diagnosed from 2008 to 2010 through the electronic medical record. We abstracted data, including patient characteristics, disease characteristics, pathology and radiology findings, treatment details, posttreatment follow-up, and clinical outcomes. RESULTS: We included 64 patients. Median time from diagnosis to treatment initiation (DTI) was 57 days for all patients, 54 days for patients undergoing surgery only, 49 days for patients undergoing surgery followed by adjuvant radiation ± chemotherapy, 65 days for patients undergoing definitive radiation ± chemotherapy, and 29 days for patients undergoing neoadjuvant chemotherapy followed by radiation or chemoradiation. Overall, 69% of patients completed recommended treatment. Forty-two of 61 (69%) patients demonstrated adherence to posttreatment visits in year 1; this fell to 14 out of 30 patients (47%) by year 5. CONCLUSION: DTI was persistently prolonged in this study compared with prior studies in other public hospital settings. Adherence to posttreatment surveillance was suboptimal and continued to decline as the surveillance period progressed.

Knowledge and self-efficacy for caring for breast and colon cancer survivors among safety net primary care providers.

BACKGROUND: Primary care providers (PCPs) are critical to the provision of comprehensive care for cancer survivors, yet there is very little data on the practices and quality of survivorship care occurring in safety net primary care settings. This study aimed to assess the knowledge and attitudes of PCPs and preferences for care models for breast and colon cancer survivors in a safety net health network. METHODS: A modified National Cancer Institute Survey of Physician Attitudes Regarding the Care of Cancer Survivors was sent electronically to 220 PCPs in 12 primary care clinics in the San Francisco Health Network affiliated with Zuckerberg San Francisco General Hospital and Trauma Center. RESULTS: The response rate was 50% (110/220). About half of PCPs strongly/somewhat agreed (vs. strongly/somewhat disagreed) that PCPs have the knowledge needed to provide follow-up care related to breast (50%) and colon cancer (54%). Most providers (93%) correctly reported recommended frequency of mammography, however, frequency of blood tests and other imaging surveillance were not as well recognized for breast or colon cancer. Recognition of long-term side effects of chemotherapy drugs ranged from 12% for oxaliplatin to 44% for doxorubicin. Only 33% of providers reported receiving any survivorship training. The most preferred model for survivorship care was shared care model (40%). CONCLUSIONS: Safety net PCPs prefer a shared care model for care of cancer survivors but are limited by lack of training, poor communication, and poor delineation of roles. Patient-centered survivorship care can be improved through effective oncologist-PCP-patient partnerships and coordination.

Customized registry tool for tracking adherence to clinical guidelines for head and neck cancers: protocol for a pilot study.

BACKGROUND: Despite recommendations for monitoring patients with chronic and high-risk conditions, gaps still remain. These gaps are exacerbated in outpatient care, where patients and clinicians face challenges related to care coordination, multiple electronic health records, and extensive follow-up. In addition, low-income and racial/ethnic minority populations that are disproportionately cared for in safety net settings are particularly at risk to lapses in monitoring. METHODS: We aim to implement and evaluate a health information technology platform developed using systems engineering methodologies. The implementation is situated in a clinic that monitors patients with head and neck cancer within a large, urban, publicly funded hospital. Our study will evaluate the time it takes for patients to progress through key treatment milestones prior to and after implementation of the tool. We will use models controlling for secular trend to estimate the effect of the tool on improving timely and successful completion of guideline-based care processes. DISCUSSION: This protocol details the evaluation of the effectiveness of a human-centered health information technology intervention on improving timely delivery of care for high-risk populations. Other settings, including those that face challenges related to limited resources to devote to safety programs and fragmented health information technology, may benefit from this approach. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03546322. "Customized Registry Tool for Tracking Adherence to Clinical Guidelines for Head and Neck Cancers." Registered 1 June 2018.

Content shared on social media for national cancer survivors day 2018.

BACKGROUND: Studies estimate that the number of cancer survivors will double by 2050 due to improvements in diagnostic accuracy and treatment efficacy. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience. METHODS: We identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018. We used nine pre-selected hashtags to identify content. For each hashtag, we manually collected the 150 most recent posts from Twitter and the 100 most recent plus the top 9 posts from Instagram. Our preliminary sample included 1172 posts; after eliminating posts from one hashtag due to irrelevance, we were left with 1063 posts. We randomly sampled 200 of these to create a subset for analysis; after review for irrelevant posts, 193 posts remained for analysis (118 from Instagram and 75 from Twitter). We utilized a grounded theory approach to analyze the posts, first open-coding a subset to develop a codebook, then applying the codebook to the rest of the sample and finally memo writing to develop themes. RESULTS: Overall, there is substantial difference in the tone and thematic content between Instagram and Twitter posts, Instagram takes on a more narrative form that represents journeys through cancer treatment and subsequent survivorship, whereas Twitter is more factual, leaning towards advocacy, awareness and fundraising. In terms of content type, 120 posts (62%) of the sample were images, of which 42 (35%) were images of the individual posting and 28 (23%) were images of patients posted by family or friends. Of the remaining images, 14 (12%) were of support groups and 7 (6%) were of family or friends. We identified four salient themes through analysis of the social media posts from Twitter and Instagram: social support, celebrating milestones and honoring survivors, expressing identity, and renewal vs. rebirth. DISCUSSION: We observed a marked relationship between physical appearance, functional status and survivorship. Additionally, our findings suggest the importance of social support for cancer patients and survivors as well as the role social media can pay in identity formation. CONCLUSION: Our findings suggest that individuals who identify as survivors on social media define their identity fluidly, incorporating elements of physical, emotional and psychological health as well as autonomy.

Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Advancing Cancer Control in San Francisco: Cancer Screening in Under-Represented Populations.

INTRODUCTION: Cancer risk and screening data are limited in their ability to inform local interventions to reduce the burden of cancer in vulnerable populations. The San Francisco Health Information National Trends Survey was developed and administered to assess the use of cancer-related information among under-represented populations in San Francisco to provide baseline data for the San Francisco Cancer Initiative. METHODS: The survey instrument was developed through consultation with research and community partners and translated into 4 languages. Participants were recruited between May and September 2017 through community-based snowball sampling with quotas to ensure adequate numbers of under-represented populations. Chi-square tests and multivariate logistic regression were used between 2018 and 2019 to assess differences in screening rates across groups and factors associated with cancer screening. RESULTS: One thousand twenty-seven participants were recruited. Asians had lower rates of lifetime mammogram (p=0.02), Pap test (p<0.01), and prostate-specific antigen test (p=0.04) compared with non-Asians. Hispanics had higher rates of lifetime mammogram (p=0.02), lifetime Pap test (p=0.01), recent Pap test (p=0.03), and lifetime prostate-specific antigen test (p=0.04) compared with non-Hispanics. Being a female at birth was the only factor that was independently associated with cancer screening participation (AOR=3.17, 95% CI=1.40, 7.19). CONCLUSIONS: Screening adherence varied by race, ethnicity, and screening type. A collaborative, community-based approach led to a large, diverse sample and may serve as a model for recruiting diverse populations to add knowledge about cancer prevention preferences and behaviors. Results suggest targeted outreach efforts are needed to address disparate cancer screening behaviors within this diverse population.

Collective intelligence in medical decision-making: a systematic scoping review.

BACKGROUND: Collective intelligence, facilitated by information technology or manual techniques, refers to the collective insight of groups working on a task and has the potential to generate more accurate information or decisions than individuals can make alone. This concept is gaining traction in healthcare and has potential in enhancing diagnostic accuracy. We aim to characterize the current state of research with respect to collective intelligence in medical decision-making and describe a framework for diverse studies in this topic. METHODS: For this systematic scoping review, we conducted a systematic search for published literature using PubMed, Embase, Web of Science, and CINAHL on August 8, 2017. We included studies that combined the insights of two or more medical experts to make decisions related to patient care. Studies that examined medical decisions such as diagnosis, treatment, and management in the context of an actual or theoretical patient case were included. We include studies of complex medical decision-making rather than identification of a visual finding, as in radiology or pathology. We differentiate between medical decisions, in which synthesis of multiple types of information is required over time, and studies of radiological scans or pathological specimens, in which objective identification of a visual finding is performed. Two reviewers performed article screening, data extraction, and final inclusion for analysis. RESULTS: Of 3303 original articles, 15 were included. Each study examined the medical decisions of two or more individuals; however, studies were heterogeneous in their methods and outcomes. We present a framework to characterize these diverse studies, and future investigations, based on how they operationalize collective intelligence for medical decision-making: 1) how the initial decision task was completed (group vs. individual), 2) how opinions were synthesized (information technology vs. manual vs. in-person), and 3) the availability of collective intelligence to participants. DISCUSSION: Collective intelligence in medical decision-making is gaining popularity to advance medical decision-making and holds promise to improve patient outcomes. However, heterogeneous methods and outcomes make it difficult to assess the utility of collective intelligence approaches across settings and studies. A better understanding of collective intelligence and its applications to medicine may improve medical decision-making.