An Extraordinary Voice Expressed Through Humor: A Tribute to Casey Quinlan.

The Journal of Participatory Medicine introduces Extraordinary Lives, a new journal section celebrating the voices and work of steadfast advocates of participatory medicine that we have lost. This inaugural essay spotlights Casey Quinlan, a patient activist who effectively used her humor and incisive analysis of health care to encourage others to strive for meaningful change. A first-generation "professional patient," Casey served as a role model who inspired many to share their stories and achieve genuine partnerships in care delivery. A maker of "good trouble," her voice and stance were part of her power and influence in disrupting the status quo. We present her fight for personal access to health data, her aspiration for personally customized evidence, and her drive for all people to control their health and their health care.

Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices.

BACKGROUND: Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)-affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices. METHODS: We conducted 14 semi-structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators. RESULTS: Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis-heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance. CONCLUSIONS: SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies.

Oncology Nurses Can Build Patient-Centered Outcomes Research Partnerships.

Nurses can inform and lead patient-centered outcomes research (PCOR) projects that address care-related questions prioritized by patients. However, PCOR projects may fail to materialize because time constraints create barrier.

Defining Priorities in Value-Based Cancer Care: Insights From the Alliance for Clinical Trials in Oncology National Cooperative Group Survey.

PURPOSE: We determine how stakeholders prioritize the importance of oncologic outcomes, patient-reported outcomes (PROs), and cancer-related health care costs. METHODS: A survey was distributed to the National Clinical Trials Network Alliance for Clinical Trials in Oncology cooperative group membership from May 14 to June 30, 2022. Respondents were asked to rate (5-point Likert scale) and rank (1-9) evidence-based value domains: overall survival, treatment toxicities/complications, quality of life (QOL), financial toxicity, access to care, compliance with evidence-based care, health system performance, scientific discovery and innovation, and cost to the health care system. RESULTS: A total of 514 members responded, including researchers (24.7%), nurses (19.5%), medical oncologists (17.9%), administrators (9.3%), surgical and radiation oncologists (9.1%), patient advocates (3.1%), and nonphysician providers (16.4%). Participants represented various practice settings including National Cancer Institute-designated cancer centers (29.8%), university-affiliated academic cancer centers (21%), hospital-owned oncology practices (21.8%), and others (27.4%). There was agreement in how respondents prioritized value domains (W = 0.39, P < .001). Respondents ranked patient QOL (mean rank: 2.6 ± 1.9) as most important above all other metrics including survival (mean rank: 3.5 ± 0.3) and access to care (mean rank: 3.5 ± 2.1; P < .001). Members engaged in direct patient care also ranked access to care of higher importance than nonclinicians (P = .026). Cost to the health care system (mean rank: 7.5 ± 2.1) and health system performance (mean rank: 7 ± 2) were ranked as least important (P < .001). Inclusion of PROs into therapeutic assessment (59.3%) was the most frequently selected priority of future cooperative group initiatives. CONCLUSION: Oncology community stakeholders deemed patient-centered value domains as most important and considered patient QOL the highest priority. Inclusion of PROs into clinical trials was endorsed as an important component of therapeutic assessment. These findings can be taken into consideration when creating a value framework for inclusion in cancer clinical trials.

Short- and long-term strategies for navigating research-ambivalent organizational cultures besetting embedded researchers.

Many health systems may host embedded researchers (ERs) and provide fiscal resources to encourage health service research. However, ERs may remain challenged to initiate research in these settings. This discussion examines how health system culture may impede research initiation, thereby exposing a paradox for embedded researchers immersed in research-ambivalent health systems. The discussion ultimately describes potential short-term and long-term strategies embedded researchers may employ to initiate scholarly inquiry in research-ambivalent health systems.

Feasibility and acceptability of an online intervention to enhance hopefulness among oncology professionals.

BACKGROUND: Patients prefer medical communication including both hopefulness and realism, though health-care professional (HCPs) struggle to balance these. Providers could thus benefit from a detailed personal understanding of hope, allowing them to model and convey it to patients. Additionally, given that hope is associated with lower levels of burnout, HCPs may benefit from tools designed to enhance their own personal hopefulness. Several investigators have proposed offering HCPs interventions to augment hope. We developed an online workshop for this purpose. METHODS: Feasibility and acceptability of the workshop were assessed in members of the SWOG Cancer Research Network. Three measures were used: the Was-It-Worth-It scale, a survey based on the Kirkpatrick Training Evaluation Model, and a single item prompting participants to rate the degree to which they believe concepts from the workshop should be integrated into SWOG studies. RESULTS: Twenty-nine individuals signed up for the intervention, which consisted of a single 2-hour session, and 23 completed measures. Results from Was-It-Worth-It items indicate that nearly all participants found the intervention relevant, engaging, and helpful. Mean ratings for Kirkpatrick Training Evaluation Model items were high, ranging from 6.91 to 7.70 on 8-point scales. Finally, participants provided a mean rating of 4.44 on a 5-point scale to the item "To what degree do you believe it may be useful to integrate concepts from this workshop into SWOG trials/studies?" CONCLUSIONS: An online workshop to enhance hopefulness is feasible and acceptable to oncology HCPs. The tool will be integrated into SWOG studies evaluating provider and patient well-being.

Guidelines to Establish an Equitable Mobile Health Ecosystem.

Mobile health (mHealth)-that is, use of mobile devices, such as mobile phones, monitoring devices, personal digital assistants, and other wireless devices, in medical care-is a promising approach to the provision of support services. mHealth may aid in facilitating monitoring of mental health conditions, offering peer support, providing psychoeducation (i.e., information about mental health conditions), and delivering evidence-based practices. However, some groups may fail to benefit from mHealth despite a high need for mental health services, including people from racially and ethnically disadvantaged groups, rural residents, individuals who are socioeconomically disadvantaged, and people with disabilities. A well-designed mHealth ecosystem that considers multiple elements of design, development, and implementation can afford disadvantaged populations the opportunity to address inequities and facilitate access to and uptake of mHealth. This article proposes inclusion of the following principles and standards in the development of an mHealth ecosystem of equity: use a human-centered design, reduce bias in machine-learning analytical techniques, promote inclusivity via mHealth design features, facilitate informed decision making in technology selection, embrace adaptive technology, promote digital literacy through mHealth by teaching patients how to use the technology, and facilitate access to mHealth to improve health outcomes.

Enrolling Older Adults Onto National Cancer Institute-Funded Clinical Trials in Community Oncology Clinics: Barriers and Solutions.

In April 2021, the National Cancer Institute (NCI) Division of Cancer Prevention collaborated with the NCI Division of Cancer Treatment and Diagnosis to produce a virtual workshop that developed recommendations for enhancing NCI-sponsored clinical trial accrual of older adults. Prior to the workshop, a multidisciplinary group of stakeholders (eg, community oncologists, advanced practice practitioners, clinic and research staff, and patient advocates) gathered information related to accrual of older adults to clinical trials from the literature. Subsequently, a survey was conducted to detail NCI Community Oncology Research Program members' perspective on accrual barriers for this population; 305 individuals responded to the survey. Barriers to clinical trial accruals included comorbidity-attributed trial ineligibility, transportation and time issues, concern that the proposed regimen is too toxic for older adults, patient or family caregiver declined participation, and lack of trials relevant to older patients. Identified solutions included broadening clinical trial inclusion criteria, increasing the number of clinical trials specifically designed for older adults, simplifying consent forms, improving recruitment materials for older adults and their families, and facilitating transportation vouchers. At the workshop, participants, including stakeholders, used prior literature and survey results to develop recommendations, including interventions to address clinician bias, implement geriatric assessment, and promote clinician and staff engagement as mechanisms to improve accrual of older adults to clinical trials.

Trial Design Considerations to Increase Older Adult Accrual to National Cancer Institute Clinical Trials.

Although adults aged 65 years or older make up a strong majority of cancer patients, their underrepresentation in cancer clinical trials leads to the lack of representative data to guide evidence-based therapeutic decisions in this patient population. The Trial Design Working Group, convened as part of the workshop titled, Engaging Older Adults in the National Cancer Institute Clinical Trials Network: Challenges and Opportunities, recommended study designs and design elements that could improve accrual of older adults in National Cancer Institute-funded clinical trials. These include trials that are specifically designed to enroll older adults, trials that include a cohort of older patients (parallel cohort, stratified cohort, or embedded cohort), and trials with pragmatic design elements to facilitate enrollment of older adults. This manuscript provides brief descriptions of the recommended designs, examples of successful trials, and considerations for implementation of these designs. As with any clinical trial, the scientific questions and trial objectives should drive the study design, the selection of endpoints and intervention, and eligibility criteria. When designing trials that include older adults, the heterogeneity of fitness levels is an important consideration as fitness can influence accrual rates and outcomes. Appropriately incorporating geriatric assessments can help identify the optimal subset of older patients for inclusion and minimize selection bias. Incorporating pragmatic design elements to reduce the burden on trial participants as well as on accruing sites and retaining essential elements to ensure that the main goal of the trial can be accomplished can enhance enrollment without compromising the integrity of trials.

Access to urologists for participation in research: An analysis of NCI's Community Oncology Research Program landscape survey.

Purpose: Urological cancer clinical trials face accrual challenges, which may stem from structural barriers within cancer programs. We sought to describe the extent to which urology cancer care providers are available within community cancer research programs and explore the role of oncology practice group ownership in their access to urology practices to participate in research. Materials and methods: We conducted secondary analysis of organizational survey data collected in 2017 among National Cancer Institute Community Oncology Research Program practice groups. We used logistic regression to assess the association of self-reported access to urologists to participate in research and oncology practice group ownership type: independent, payor-provider, health-system, or public ownership. Results: Of the 209 community oncology practice groups in the analysis sample, 133 (63.6%) had access to urologists for research participation. Ownership was not statistically significantly associated with access to urology practices after controlling for other covariates (p = 0.4). Instead, having a hospital outpatient clinic (p = 0.008) and identifying as a safety-net hospital (p = 0.035) were both positively significantly associated with access to urologists to participate in research. Conclusions: Two-thirds of community cancer research groups have access to urology. Oncology ownership status was not associated with access to urologists for research. Research groups may need support to increase their capacity to engage non-oncology cancer care providers in research.

Characterization of older adults with cancer seeking acute emergency department care: A prospective observational study.

INTRODUCTION: Disparities in care of older adults in cancer treatment trials and emergency department (ED) use exist. This report provides a baseline description of older adults ≥65 years old who present to the ED with active cancer. MATERIALS AND METHODS: Planned secondary analysis of the Comprehensive Oncologic Emergencies Research Network observational ED cohort study sponsored by the National Cancer Institute. Of 1564 eligible adults with active cancer, 1075 patients were prospectively enrolled, of which 505 were ≥ 65 years old. We recruited this convenience sample from eighteen participating sites across the United States between February 1, 2016 and January 30, 2017. RESULTS: Compared to cancer patients younger than 65 years of age, older adults were more likely to be transported to the ED by emergency medical services, have a higher Charlson Comorbidity Index score, and be admitted despite no significant difference in acuity as measured by the Emergency Severity Index. Despite the higher admission rate, no significant difference was noted in hospitalization length of stay, 30-day mortality, ED revisit or hospital admission within 30 days after the index visit. Three of the top five ED diagnoses for older adults were symptom-related (fever of other and unknown origin, abdominal and pelvic pain, and pain in throat and chest). Despite this, older adults were less likely to report symptoms and less likely to receive symptomatic treatment for pain and nausea than the younger comparison group. Both younger and older adults reported a higher symptom burden on the patient reported Condensed Memorial Symptom Assessment Scale than to ED providers. When treating suspected infection, no differences were noted in regard to administration of antibiotics in the ED, admissions, or length of stay ≤2 days for those receiving ED antibiotics. DISCUSSION: We identified several differences between older (≥65 years old) and younger adults with active cancer seeking emergency care. Older adults frequently presented for symptom-related diagnoses but received fewer symptomatic interventions in the ED suggesting that important opportunities to improve the care of older adults with cancer in the ED exist.

Palliative Care Needs and Clinical Outcomes of Patients with Advanced Cancer in the Emergency Department.

Background: Older adults with cancer use the emergency department (ED) for acute concerns. Objectives: Characterize the palliative care needs and clinical outcomes of advanced cancer patients in the ED. Design: A planned secondary data analysis of the Comprehensive Oncologic Emergencies Research Network (CONCERN) data. Settings/Subjects: Cancer patients who presented to the 18 CONCERN affiliated EDs in the United States. Measurements: Survey included demographics, cancer type, functional status, symptom burden, palliative and hospice care enrollment, and advance directive code status. Results: Of the total (674/1075, 62.3%) patients had advanced cancer and most were White (78.6%) and female (50.3%); median age was 64 (interquartile range 54-71) years. A small proportion of them were receiving palliative (6.5% [95% confidence interval; CI 3.0-7.6]; p = 0.005) and hospice (1.3% [95% CI 1.0-3.2]; p = 0.52) care and had a higher 30-day mortality rate (8.3%, [95% CI 6.2-10.4]). Conclusions: Patients with advanced cancer continue to present to the ED despite recommendations for early delivery of palliative care.

Development of a measure of clinicians' self-efficacy for medical communication (SEMC).

OBJECTIVES: Studies of clinician-patient communication have used varied, ad hoc measures for communication efficacy. We developed and validated the Self-Efficacy for Medical Communication (SEMC) scale as a standard, quantitative measure of clinician-reported skills in communicating difficult news. METHODS: Using evidence-based scale development guidelines, we created two 16-item forms of the SEMC, one assessing communication with patients and one assessing communication with families. Clinicians providing oncological care in four organisations were invited to participate and provided consent. Participant demographics, responses to the SEMC items and responses to convergent and discriminant measures (those expected to relate strongly and weakly to the SEMC) were collected online. We performed analyses to determine the convergent and discriminant validity of the SEMC as well as its reliability and factor structure. RESULTS: Overall, 221 oncology clinicians (including physicians, residents, fellows, medical students, nurses, nurse practitioners and physician assistants) participated. The patient and family forms both demonstrated high internal consistency reliability (alpha=0.94 and 0.96, respectively) and were strongly correlated with one another (r=0.95, p<0.001). Exploratory factor analysis demonstrated that the SEMC measures a unitary construct (eigenvalue=9.0), and its higher mean correlation with convergent (r=0.46) than discriminant (r=0.22) measures further supported its validity. CONCLUSIONS: Our findings support the SEMC's validity and reliability as a measure of clinician-rated communication skills regarding conducting difficult conversations with patients and families. It provides a useful standard tool for future research in oncology provider-patient serious illness communication.

Observation unit use among patients with cancer following emergency department visits: Results of a multicenter prospective cohort from CONCERN.

PURPOSE: Emergency department (ED) visits by patients with cancer frequently end in hospitalization. As concerns about ED and hospital crowding increase, observation unit care may be an important strategy to deliver safe and efficient treatment for eligible patients. In this investigation, we compared the prevalence and clinical characteristics of cancer patients who received observation unit care with those who were admitted to the hospital from the ED. METHODS: We performed a multicenter prospective cohort study of patients with cancer presenting to an ED affiliated with one of 18 hospitals of the Comprehensive Oncologic Emergency Research Network (CONCERN) between March 1, 2016 and January 30, 2017. We compared patient characteristics with the prevalence of observation unit care usage, hospital admission, and length of stay. RESULTS: Of 1051 enrolled patients, 596 (56.7%) were admitted as inpatients, and 72 (6.9%) were placed in an observation unit. For patients admitted as inpatients, 23.7% had a length of stay ≤2 days. The conversion rate from observation to inpatient was 17.1% (95% CI 14.6-19.4) among those receiving care in an observation unit. The average observation unit length of stay was 14.7 h. Patient factors associated ED disposition to observation unit care were female gender and low Charlson Comorbidity Index. CONCLUSION: In this multicenter prospective cohort study, the discrepancy between observation unit care use and short inpatient hospitalization may represent underutilization of this resource and a target for process change.

General orders for the embedded researcher: Moorings for a developing profession.

Learning health systems increasingly welcome embedded researchers as stakeholders poised to inform evidence-based practice. While care systems are potentially familiar with the embedded researcher tools and techniques, care systems may less frequently consider embedded research as a vocation. This insensitivity potentially reduces embedded researchers merely to instruments, as opposed to professional partners in transdisciplinary research. This discussion outlines "general orders" for embedded researchers. The general orders outline embedded researchers' fundamental identity and guide conduct as a means to encourage a shared identity among embedded researchers and clarify embedded researchers' roles in learning health system teams. Students and embedded researchers newly engaging learning health systems may particularly benefit from this rudimentary order list.

Multilevel predictors of guideline concordant needle biopsy use for non-metastatic breast cancer.

PURPOSE: Persistent breast cancer disparities, particularly geographic disparities, may be explained by diagnostic practice patterns such as utilization of needle biopsy, a National Quality Forum-endorsed quality metric for breast cancer diagnosis. Our objective was to assess the relationship between patient- and facility-level factors and needle biopsy receipt among women with non-metastatic breast cancer in the United States. METHODS: We examined characteristics of women diagnosed with breast cancer between 2004 and 2015 in the National Cancer Database. We assessed the relationship between patient- (e.g., race/ethnicity, stage, age, rurality) and facility-level (e.g., facility type, breast cancer case volume) factors with needle biopsy utilization via a mixed effects logistic regression model controlling for clustering by facility. RESULTS: In our cohort of 992,209 patients, 82.96% received needle biopsy. In adjusted models, the odds of needle biopsy receipt were higher for Hispanic (OR 1.04, Confidence Interval 1.01-1.08) and Medicaid patients (OR 1.04, CI 1.02-1.08), and for patients receiving care at Integrated Network Cancer Programs (OR 1.21, CI 1.02-1.43). Odds of needle biopsy receipt were lower for non-metropolitan patients (OR 0.93, CI 0.90-0.96), patients with cancer stage 0 or I (at least OR 0.89, CI 0.86-0.91), patients with comorbidities (OR 0.93, CI 0.91-0.94), and for patients receiving care at Community Cancer Programs (OR 0.84, CI 0.74-0.96). CONCLUSION: This study suggests a need to account for sociodemographic factors including rurality as predictors of utilization of evidence-based diagnostic testing, such as needle biopsy. Addressing inequities in breast cancer diagnosis quality may help improve breast cancer outcomes in underserved patients.