Defying the odds: facilitating integration of abortion care into clinical practice in the United States.

OBJECTIVES: We sought to describe the experiences of physicians who successfully integrated or included abortion care into their practices in the United States. We explored facilitators of and barriers to integrating abortion care. STUDY DESIGN: In this qualitative study, we conducted semi-structured interviews with a national sample of obstetrician-gynecologists and family medicine physicians who provide abortion care. Interviews addressed facilitating factors, barriers to abortion provision, lessons learned in integrating abortion care, and coaching suggestions for future providers. We analyzed data using a content analysis approach. RESULTS: We interviewed 14 obstetrician-gynecologists and 11 family medicine physicians who integrated or included abortion provision as part of their practices. We identified four categories of facilitators and barriers: personal, community, training and professional/workplace factors. Major facilitators included supportive leadership and professional mentorship. Major barriers included unsupportive staff/colleagues and antagonistic medical and administrative leadership. Lessons learned included the need for proactive assessment of leadership support, identification of allies within employment leadership, and active engagement in minimizing workplace conflict. Physicians successful in integrating or including abortion provision into their practice stressed the importance of being perceived as a team player. Participants recommended resources to support providers including clinical support, mentorship, funding, assistance with negotiations for institutional support for abortion provision, and access to clinical policies and documents. CONCLUSION: Institutional leadership support emerged as a critical facilitator for initiating and continuing to offer abortion care. Efforts to expand abortion access should include investments in supportive leadership, both in academic and community practices. IMPLICATIONS: Maximizing abortion access is essential to counteract the legislative and political restrictions imposed on abortion care. Institutional support is a critical facilitator of abortion provision, and efforts to expand abortion access should include investments in supportive leadership and healthcare administration.

Evaluating a web-based training curriculum for disseminating best practices for the care of newborns with neonatal opioid withdrawal syndrome in a rural hospital, the NOWS-NM Program.

BACKGROUND: The incidence of neonatal opiate withdrawal syndrome (NOWS) in the US has grown dramatically over the past two decades. Many rural hospitals not equipped to manage these patients transfer them to hospitals in bigger cities. METHODS: We created a curriculum, the NOWS-NM Program, a web-based curriculum training in best practices. To evaluate the curriculum, we conducted pre- and post-surveys of NOWS knowledge, attitudes, and care practices, plus post-curriculum interviews and focus groups. RESULTS: Fourteen participants completed both pre- and post-curriculum surveys. They indicated an increase in knowledge and care practices. A small number of respondents expressed negative attitudes about parents of infants with NOWS at pre-test, the training curriculum appeared to have no impact on such attitudes at post-test. Sixteen participants participated in focus groups or interviews. Qualitative data reinforced the positive quantitative results and contradicted the negative survey results, respondents reported that the program did reduce stigma and improve provider/staff interactions with patients. CONCLUSIONS: This curriculum demonstrated positive impacts on NOWS knowledge and care practices. Incorporating focus on core concepts of trauma-informed care and self-regulation in future iterations of the curriculum may strengthen the opportunity to change attitudes and address the needs expressed by participants and improve care of families and babies with NOWS.

Exploring the role of cancer fatalism and engagement with skin cancer genetic information in diverse primary care patients.

OBJECTIVE: To broaden the currently limited reach of genomic innovations, research is needed to understand how psychosocial and cultural factors influence reactions to genetic testing in diverse subgroups. Cancer fatalism is important in cancer prevention and deserves theoretical and empirical attention in the context of genomics and behavior change. METHODS: The current study employed data from a randomized controlled trial (N = 593) offering skin cancer genetic testing (using the melanocortin-1 receptor [MC1R] gene) in primary care in Albuquerque, New Mexico, USA. We examined interrelations of cancer fatalism with demographics, general health beliefs, perceived risk, perceived control, sun protection and skin screening behaviors and cancer worry in the skin cancer context stratified across Hispanic versus non-Hispanic ethnicity, and examined cancer fatalism as a moderator of intervention effects on study primary outcomes, including 3-month sun protection, cancer worry and perceived risk. RESULTS: Cancer fatalism was significantly related to the perception of control over skin cancer risk behaviors (ps ≤ 0.01) and demographics (ethnicity, education, health literacy; ps < 0.05), but not consistently related to general health beliefs or risk perception. Cancer fatalism did not moderate intervention effects on primary outcomes, except those with higher cancer fatalism randomized to intervention had higher levels of 3-month cancer worry (p = 0.019). CONCLUSIONS: These findings will guide future work considering the role of cancer fatalism in use of genomic technologies in the general population. This work anticipates strategies required to address cancer fatalism as translational genomics becomes more commonly available to diverse general population subgroups.

Critical decisions: A mixed-methods study of decision-making among diverse gynecologic cancer patients considering therapeutic clinical trial enrollment.

OBJECTIVE: Participation in therapeutic clinical trials does not reflect the diversity of gynecologic cancer patients, limiting access to novel therapeutics and generalizability of results. Reasons for inequities in participation among historically underrepresented populations remain undertheorized, as studies have shown equal willingness to participate among groups. We sought to apply a precarity framework to conceptualize the factors that impact patients' desire to enroll, to improve equity in gynecologic oncology clinical trial participation. METHODS: Gynecologic cancer patients at a single tertiary care facility in the Southwestern United States who discussed participation in therapeutic clinical trial with their oncology provider from 2020 to 2021 were identified. Enrolled participants completed surveys and qualitative interviews regarding treatment experiences and decision-making. Oncology providers completed parallel surveys at the time of their patient's enrollment. Descriptive statistics and thematic coding were used to analyze data. RESULTS: 30 patients were enrolled and participated in surveys and interviews. No differences were found in quantitative data assessing shared decision-making and patient-centered communication between those who enrolled and those who did not. Qualitative data demonstrated that patients who declined trial enrollment expressed concerns regarding uncertainty and loss of control, independence in decision-making, and significant resource challenges and financial toxicity of cancer treatment. CONCLUSIONS: We identified a constellation of factors that contribute to desire to enroll in clinical trials, that we describe using the framework of precarity. Through identification of precarious patients and mitigation of burdens, we anticipate improved enrollment and retention in therapeutic clinical trials among diverse gynecologic oncology patients.

#4Corners4Health Social Media Cancer Prevention Campaign for Emerging Adults: Protocol for a Randomized Stepped-Wedge Trial.

BACKGROUND: Many emerging adults (EAs) are prone to making unhealthy choices, which increase their risk of premature cancer morbidity and mortality. In the era of social media, rigorous research on interventions to promote health behaviors for cancer risk reduction among EAs delivered over social media is limited. Cancer prevention information and recommendations may reach EAs more effectively over social media than in settings such as health care, schools, and workplaces, particularly for EAs residing in rural areas. OBJECTIVE: This pragmatic randomized trial aims to evaluate a multirisk factor intervention using a social media campaign designed with community advisers aimed at decreasing cancer risk factors among EAs. The trial will target EAs from diverse backgrounds living in rural counties in the Four Corners states of Arizona, Colorado, New Mexico, and Utah. METHODS: We will recruit a sample of EAs (n=1000) aged 18 to 26 years residing in rural counties (Rural-Urban Continuum Codes 4 to 9) in the Four Corners states from the Qualtrics' research panel and enroll them in a randomized stepped-wedge, quasi-experimental design. The inclusion criteria include English proficiency and regular social media engagement. A social media intervention will promote guideline-related goals for increased physical activity, healthy eating, and human papillomavirus vaccination and reduced nicotine product use, alcohol intake, and solar UV radiation exposure. Campaign posts will cover digital and media literacy skills, responses to misinformation, communication with family and friends, and referral to community resources. The intervention will be delivered over 12 months in Facebook private groups and will be guided by advisory groups of community stakeholders and EAs and focus groups with EAs. The EAs will complete assessments at baseline and at 12, 26, 39, 52, and 104 weeks after randomization. Assessments will measure 6 cancer risk behaviors, theoretical mediators, and participants' engagement with the social media campaign. RESULTS: The trial is in its start-up phase. It is being led by a steering committee. Team members are working in 3 subcommittees to optimize community engagement, the social media intervention, and the measures to be used. The Stakeholder Organization Advisory Board and Emerging Adult Advisory Board were formed and provided initial input on the priority of cancer risk factors to target, social media use by EAs, and community resources available. A framework for the social media campaign with topics, format, and theoretical mediators has been created, along with protocols for campaign management. CONCLUSIONS: Social media can be used as a platform to counter misinformation and improve reliable health information to promote health behaviors that reduce cancer risks among EAs. Because of the popularity of web-based information sources among EAs, an innovative, multirisk factor intervention using a social media campaign has the potential to reduce their cancer risk behaviors. TRIAL REGISTRATION: ClinicalTrials.gov NCT05618158; https://classic.clinicaltrials.gov/ct2/show/NCT05618158. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50392.

Developing questions to assess and measure patients' perceived survival benefit from adjuvant endocrine therapy in breast cancer: a mixed methods pilot study.

This mixed method study developed multiple question types to understand and measure women's perceived benefit from adjuvant endocrine therapy. We hypothesis that patients do not understand this benefit and sought to develop the questions needed to test this hypothesis and obtain initial patient estimates. From 8/2022 to 3/2023, qualitative interviews focused on assessing and modifying 9 initial varied question types asking about the overall survival (OS) benefit from adjuvant endocrine therapy. Subsequent focus groups modified and selected the optimal questions. Patients' self-assessment of their OS benefit was compared to their individualized PREDICT model results. Fifty-three patients completed the survey; 42% Hispanic, 30% rural, and 47% with income < $39,999 per year. Patients reported adequate health care literacy (61.5%) and average confidence about treatment and medication decisions 49.4 (95% CI 24.4-59.5). From the original 9 questions, 3 modified questions were ultimately found to capture patients' perception of this OS benefit, focusing on graphical and prose styles. Patients estimated an OS benefit of 42% compared to 4.4% calculated from the PREDICT model (p < 0.001). In this group with considerable representation from ethnic minority, rural and low-income patients, qualitative data showed that more than one modality of question type was needed to clearly capture patients' understanding of treatment benefit. Women with breast cancer significantly overestimated their 10-year OS benefit from adjuvant endocrine therapy compared to the PREDICT model.

Implementation of pharmacy access to hormonal contraception.

BACKGROUND: States throughout the country are enacting legislation to authorize pharmacist prescribing of hormonal contraception to decrease barriers to access. Little is known about the process of state implementation of pharmacist prescriptive authority for hormonal contraception. OBJECTIVES: To understand the state-level steps to enable pharmacist prescribing of hormonal contraception, including implementation challenges and facilitators. METHODS: We conducted a qualitative study of interviews with 18 key individuals, including pharmacists and other stakeholders, from ten states with laws permitting pharmacist-prescribed hormonal contraception from March 2021 to April 2022. We analyzed data using directed qualitative analysis principles and compared experiences across states. We organized the data using the Consolidated Framework for Implementation Research framework and evaluated relevant constructs in states' implementation efforts. RESULTS: Participants identified four key steps to implement pharmacist prescribing at the state level, including development of state rules and regulations, educational programs, reimbursement mechanisms, and expansion strategies to pharmacists and pharmacies. Participants identified early involvement of key stakeholders and a culture of support for clinical pharmacists as facilitators to implementation. Challenges included complexity and cost of billing mechanisms, lack of funding for implementation efforts, and competing priorities of pharmacies/pharmacists. CONCLUSION: Participants in states with pharmacist prescriptive authority for hormonal contraception identified development of reimbursement and billing mechanisms as the most critical state-level step in implementation. Focusing on facilitators of key steps can guide states in developing successful implementation strategies to improve contraceptive access.

Differing Experiences of Nutrition Care During Treatment Among Oncology Nurses, Providers, and Patients.

BACKGROUND: Provision of nutrition care for patients with cancer represents a key component of holistic oncology care. However, information is limited about the use and perceptions of registered dietitian-led nutrition care in the oncology setting. OBJECTIVES: This study aimed to better understand the experiences and expectations of patients and healthcare workers regarding nutrition care during outpatient cancer treatment. METHODS: Oncology care team members (N = 55) and patients (N = 90) completed a survey about their knowledge of and interest in nutrition care. A subset of participants completed semistructured interviews to capture experiences with and perspectives on nutrition care practices. FINDINGS: The majority of patients (n = 73) reported experiencing at least one nutrition impact symptom, but only 14 indicated that they frequently discussed nutrition during provider visits. In addition, 40 oncology care team members indicated frequently discussing nutrition at visits, although 13 were unaware of local nutrition resources.

"Care needs to be integrated" Patient and provider perspectives on a cancer shared-care model.

PURPOSE: Current early-stage breast and gynecological cancer care models often begin with a referral from a primary care provider (PCP) or gynecologist (OB/Gyn) and end with a patient being transitioned back to the referring provider at the completion of treatment. There is frequently little communication between oncologists and the referring provider during treatment, and this pattern continues after the patient completes their treatment. METHODS: We convened a diverse Patient Advisory Board (PAB) to identify areas where breast or gynecological cancer patients felt they could benefit from additional support during and after their cancer care. PAB members attended five Zoom meetings and completed four online surveys. Semi-structured interviews were conducted with primary care or OB/Gyn physicians to collect information on current practices. RESULTS: Patients identified multiple areas in which they needed additional support from their PCP. Providers also identified topics on which they could use additional training. However, there was little overlap between patient and provider priority topics. Both patients and providers agreed that there was inadequate communication between the cancer center and PCPs before, during, and after cancer treatment. CONCLUSIONS: A shared-care model that emphasizes communication between primary care providers, the oncology care team, and patients is urgently needed. Patients indicated the need for additional support from their PCP on specific topics, and PCPs were interested in continuing their education to better serve their patients with cancer. IMPLICATIONS FOR CANCER SURVIVORS: The importance of consistent communication among all parties during the entire cancer journey was emphasized as a key area for improvement.

Association of MOUD ECHO Participation on Expansion of Buprenorphine Prescribing in Rural Primary Care.

BACKGROUND: Lack of access to buprenorphine to treat Opioid Use Disorder is profound in rural areas where over half of small and remote rural counties have no buprenorphine prescriber. To increase prescribing, an online, Medication of Opioid Use Disorder (MOUD) Extensions for Community Healthcare Outcomes (ECHO) was developed that addressed known barriers to the startup and expansion of treatment. The objective of the present study was to determine the relationship between participating in MOUD ECHO sessions and prescribing of buprenorphine for OUD in rural primary care. METHODS: Using non-random, rolling-recruitment from Feb 2018 to October of 2021, all rural primary care clinics in New Mexico were contacted via phone call and fax to recruit providers (Physicians, Nurse Practitioners, and Physician Assistants) who had no or limited buprenorphine experience to enroll in this study. Participation in the MOUD ECHO was tracked across the 12 week series. Start-up and expansion of buprenorphine treatment was measured every 3 months for up to 2 years using 5 implementation benchmarks spanning training completion, obtaining licensure, prescribing and adding patients. Using a dose-response intention to treat type analysis, associations between number of sessions and benchmark achievement were analyzed using logistic regression. RESULTS: Eighty providers were enrolled, mostly female (66%) white (82%), non-Hispanic (82%), and mostly nurse practitioners (51%) or MDs (38%). Achievement of prescribing benchmarks at 6 months was significantly increased by attendance at MOUD ECHO sessions including obtaining training and licensure Odds Ratio (OR = 1.24; P = .001); starting to prescribe (OR = 1.31; P = .004), and adding patients (OR = 1.14; P = .025). CONCLUSIONS: This study provides compelling evidence that MOUD ECHO participation may significantly increase the number of providers implementing this treatment and adding patients onto their panels. The dose-response approach helps address current gaps in ECHO research that call for more rigorous examination of the ECHO model's impact on provider practice improvements.

Developing Questions to Assess and Measure Patients' Perceived Survival Benefit from Adjuvant Endocrine Therapy in Breast Cancer: A Mixed Methods Pilot Study.

Purpose: This mixed methods study developed multiple question types to understand and measure women's perceived benefit from adjuvant endocrine therapy. We hypothesis that patients do not understand this benefit and sought to develop the questions needed to test this hypothesis and obtain initial patient estimates. Methods: From 8/2022 to 3/2023, qualitative interviews focused on assessing and modifying 9 initial varied question types asking about the overall survival (OS) benefit from adjuvant endocrine therapy. Subsequent focus groups modified and selected the optimal questions. Patients' self-assessment of their OS benefit was compared to their individualized PREDICT model results. Results: Fifty-three patients completed the survey; 42% Hispanic, 30% rural, and 47% with income <$39,999 per year. Patients reported adequate health care literacy (61.5%) and average confidence about treatment and medication decisions 49.4 (95% CI 24.4-59.5). From the original 9 questions, 3 modified questions were ultimately found to capture patients' perception of this OS benefit, focusing on graphical and prose styles. Patients estimated an OS benefit of 42% compared to 4.4% calculated from the PREDICT model (p < 0.001). Conclusion: In this group with considerable representation from ethnic minority, rural and low-income patients, qualitative data showed that more than one modality of question type was needed to clearly capture patients' understanding of treatment benefit. Women with breast cancer significantly overestimated their 10-year OS benefit from adjuvant endocrine therapy compared to the PREDICT model.

A culturally informed model to enhance breast, cervical, and colorectal cancer screenings: perspectives of American Indian adults and healthcare providers in rural New Mexico.

PURPOSE: American Indian/Alaska Native (AI/AN) populations have some of the lowest cancer screening rates compared to other racial/ethnic populations. Using community-based participatory research methods, we sought to characterize knowledge, attitudes, beliefs, and approaches to enhance breast, colorectal, and cervical cancer screening. METHODS: We conducted 12 focus groups between October 2018 and September 2019 with 96 eligible AI adults and healthcare providers, recruited using non-probability purposive sampling methods from the Zuni Pueblo in rural New Mexico. We used the Multi-level Health Outcomes Framework (MHOF) to conduct a qualitative content analysis identifying mutable systems- and individual- level constructs important for behavior change that we crosslinked with the Community Preventive Services Task Force (CPSTF) recommended evidence-based interventions (EBIs) or approaches. RESULTS: Salient systems-level factors that limited uptake of cancer screenings included inflexible clinic hours, transportation barriers, no on-demand service and reminder systems, and brief doctor-patient encounters. Individual-level barriers included variable cancer-specific knowledge that translated into fatalistic beliefs, fear, and denial. Interventions to enhance community demand and access for screening should include one-on-one and group education, small media, mailed screening tests, and home visitations by public health nurses. Interventions to enhance provider delivery of screening services should include translation and case management services. CONCLUSIONS: The MHOF constructs crosslinked with CPSTF recommended EBIs or approaches provided a unique perspective to frame barriers and promoters of screening utilization and insights for intervention development. Findings inform the development of culturally tailored, theoretically informed, multi-component interventions concordant with CPSTF recommended EBIs or approaches aimed at improving cancer screening.

Use of a Community Engagement and Research Core model to enhance primary care provider recruitment: A case example.

Persistent barriers exist to engage rural providers in research and training. Provider shortages exacerbate these challenges, leading to a scarcity of time and limiting motivation to participate in research. We present application of an innovative engagement model to increase rural primary care provider participation in research. Using our Community Engagement and Research Core, we demonstrate that fundamental principles of training and expertise, attention to efficiency and multitasking, and commitment to community are important for addressing provider recruitment barriers. We encourage other Clinical and Translational Science Centers to provide similar services to their local investigators to enhance provider engagement in research.

Evaluating a Web-based Training Curriculum for Disseminating Best Practices for the Care of Newborns with Neonatal Opioid Withdrawal Syndrome in a Rural Hospital, the NOWS-NM Program.

Background: The incidence of neonatal opiate withdrawal syndrome (NOWS) in the US has grown dramatically over the past two decades. Many rural hospitals not equipped to manage these patients transfer them to hospitals in bigger cities. Methods: We created a curriculum, the NOWS-NM Program, a mobile/web-based curriculum training in best practices. To evaluate the curriculum, we conducted pre- and post-surveys of NOWS knowledge, attitudes, and care practices, plus post-curriculum interviews and focus groups. Results: Fourteen participants completed both pre- and post-curriculum surveys. They indicated an increase in knowledge and care practices. A small number of respondents expressed negative attitudes about parents of infants with NOWS at pre-test, the training curriculum appeared to have no impact on such attitudes at post-test. Sixteen participants participated in focus groups or interviews. Qualitative data reinforced the positive quantitative results and contradicted the negative survey results, respondents reported that the program did reduce stigma and improve provider/staff interactions with patients. Conclusions: This curriculum demonstrated positive impacts on NOWS knowledge and care practices. Incorporating focus on core concepts of trauma-informed care and self-regulation in future iterations of the curriculum may strengthen the opportunity to change attitudes and address the needs expressed by participants and improve care of families and babies with NOWS. Significance: This project evaluates a novel curriculum covering best practices in care of infants with neonatal opiate withdrawal syndrome (NOWS) and is oriented toward supporting care in rural NM hospitals. We evaluated the curriculum with both quantitative and qualitative methods. Results support the effectiveness of the curriculum to increase competence of rural providers in the care of patients with NOWS. The NOWS-NM Program is a novel and effective mobile training tool, especially for under-resourced, rural hospitals.

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network.

BACKGROUND: Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial interaction between study participants and researchers. PE-CGS sought to set priorities in participant engagement for conducting the network's research. METHODS: PE-CGS deliberatively engaged its stakeholders in the following four-phase process to set the network's research priorities in participant engagement: (i) a brainstorming exercise to elicit potential priorities; (ii) a 2-day virtual meeting to discuss priorities; (iii) recommendations from the PE-CGS External Advisory Panel to refine priorities; and (iv) a virtual meeting to set priorities. RESULTS: Nearly 150 PE-CGS stakeholders engaged in the process. Five priorities were set: (i) tailor education and communication materials for participants throughout the research process; (ii) identify measures of participant engagement; (iii) identify optimal participant engagement strategies; (iv) understand cancer disparities in the context of cancer genomics research; and (v) personalize the return of genomics findings to participants. CONCLUSIONS: PE-CGS is pursuing these priorities to meaningfully engage diverse and underrepresented patients with cancer and posttreatment cancer survivors as participants in cancer genomics research and, subsequently, generate new discoveries. IMPACT: Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement.

Developing catalyst films of health experiences: an analysis of a robust multi-stakeholder involvement journey.

BACKGROUND: Those whose lives are most directly impacted by health care-patients, caregivers, and frontline staff-are ideally situated to improve patient health care services and care quality. Despite a proliferation of literature on both Patient and Public Involvement (PPI) and clinical quality improvement (QI), concrete strategies regarding how to involve patients remain elusive. AIM: Research suggests catalyst films, comprised of rigorously-analyzed interview data from diverse patients about their experiences with health and health care ("catalyst films") are a promising way to bring actionable patient feedback to QI. To date, such films have been crafted primarily by researchers. This project aimed to inform the science of engagement through analyzing how deliberate PPI informed the process of creating catalyst films. METHODS: PPI methods included: research team norming activities through a project charter and role delineation process; key informant interviews; participant-ambassador videotaped interviews; clinician and research focus groups; and inclusion of advisors on the research team. Content studied for the analysis presented here included team meeting notes, interview and focus group transcripts, and documentation from a facilitated discussion about team processes. These data were analyzed to determine the impact of our PPI process. Member checking verified themes and lessons learned. RESULTS: PPI shaped team deliberations and final products in substantial ways, including: what material to include in catalyst films and the tone they should convey; multiple issues regarding representation; and our collective understanding of how catalyst films could be used in the United States. Specific discussions addressed: how to include the optimal mix of interview segments that describe experiences with those that more directly point towards care improvement strategies; and how to balance positive and negative feedback from patients about experiences with care. Team process issues included ensuring equity in involvement despite team members having differing and sometimes multiple roles that complicated power dynamics and processes. CONCLUSIONS: Multiple forms and degrees of PPI resulted in significant influence on catalyst films and companion materials. Our project thus provides proof of concept for PPI in creation of video products for QI which have traditionally been crafted by researchers. The model we developed, and document in this paper, can be adapted by others creating research-derived video products. Our findings can also inform future research on how co-designing catalyst films enhances their value for QI and the application of co-designed catalyst film use in QI. Lastly, it can guide those engaged in QI and medical education in their selection of film products focused on patient experiences.

Involving patients in care improvement efforts is valuable for improving the quality and safety of health care services because patients offer unique insights and are directly impacted by the system. Involving patients in these efforts can also inform better patient and family experiences. Studies have shown that using video interviews highlighting good and bad patient experiences in healthcare is one of the promising way to include a wider range of patient narratives and feedback in care improvement. Videos used in these situations are now called catalyst films, formerly known as trigger films. This paper describes how catalyst films are similar to and distinct from other film products used in research and improvement projects. It examines a process for equitably engaging a team of many different stakeholders­patients, providers, and researchers­to select video excerpts from existing research-based patient experience interviews to create catalyst films. It describes methods used to ensure robust input from all team members, so that all perspectives influence the catalyst films. The study concluded that patient and public involvement had significant impact on both the research process and the final products created. Our findings can equip those making or selecting films for use in improving health and social care to ensure films are patient informed. The paper concludes by offering limitations and recommendations for future research to advance the fields of patient and public involvement and quality improvement.

Patient, provider, and nurse preferences of patient reported outcomes (PRO) and side effect management during cancer treatment of underrepresented racial and ethnic minority groups, rural and economically disadvantaged patients: a mixed methods study.

PURPOSE: The purpose of this study was to evaluate patient, oncologist and nurse perspectives on side effects and patient reported outcomes (PROs) with the question of how to optimize side effect management and PRO tools in this unique population. METHODS: This pilot study utilized a mixed method explanatory design. Patients receiving intravenous (IV) chemotherapy from June to August 2020 were surveyed about side effect burden and PRO system preferences. Providers and nurses (PN) completed complementary surveys. Semi-structured phone interviews were conducted among a subset of each group. RESULTS: Of 90 patient surveys collected; 51.1% minority, 35.6% rural, and 40.0% income < $30,000, 48% felt side effect management was a significant issue. All patients reported access to a communication device but 12.2% did not own a cell phone; 68% smart phone, 20% cell phone, 22% landline, 53% computer, and 39% tablet. Patients preferred a response to reported side effects within 0-3 h (73%) while only 29% of the 55 PN surveyed did (p < 0.0001). Interviews reinforced that side effect burden was a significant issue, the varied communication devices, and a PRO system could improve side effect management. CONCLUSION: In a non-White, rural and low-income patient population, 87.8% of patients reported owning a cell phone. Although all agreed side effect management was a prominent issue, expectations between patients and PN differed substantially. Qualitative data echoed the above and providing concrete suggestions to inform development of a PRO program and side effect mitigation strategies among a diverse patient population.

The Balance Between Food and Medical Care: Experiences of Food Insecurity Among Cancer Survivors and Informal Caregivers.

Defined as an inability to acquire enough food because of insufficient money or other resources, the prevalence of food insecurity is markedly higher among cancer survivors than the general population. The objective of this qualitative study was to understand and characterize the experience of food insecurity from the perspective of cancer survivors' and their informal caregivers using qualitative interviews. Barriers to healthy eating, behaviors and strategies in times of food shortage, and unmet educational needs shaped the experience of food insecurity. These experiences and insights for addressing food insecurity in oncology practice have broad implications for future interventions.

A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research.

IMPORTANCE: Research into the genetic and genomic ("genomics") foundations of disease is central to our understanding of disease prevention, early detection, diagnostic accuracy, and therapeutic intervention. Inequitable participation in genomics research by historically excluded populations limits the ability to translate genomic knowledge to achieve health equity and ensure that findings are generalizable to diverse populations. OBSERVATIONS: We propose a novel framework for promoting diversity, equity, and inclusion in genomics research. Building on principles of community-based participatory research and collective impact frameworks, the framework can guide our understanding of the social, cultural, health system, policy, community, and individual contexts in which engagement and genomics research are being done. Our framework highlights the involvement of a multistakeholder team, including the participants and communities to be engaged, to ensure robust methods for recruitment, retention, return of genomic results, quality of engagement, follow-up, and monitoring of participants. CONCLUSIONS AND RELEVANCE: The proposed engagement framework will guide investigators in optimizing equitable representation in research and enhancing the rigor of genomics investigation.

Ethnicity, socioeconomic status, income inequality, and colorectal cancer outcomes: evidence from the 4C2 collaboration.

PURPOSE: National Cancer Institute (NCI)-Designated Cancer Centers are required to assess and address the needs of their catchments. In rural regions, catchment areas are vast, populations small, and infrastructure for data capture limited, making analyses of cancer patterns challenging. METHODS: The four NCI-Designated Comprehensive Cancer Centers in the southern Rocky Mountain region formed the Four Corners Collaboration (4C2) to address these challenges. Colorectal cancer (CRC) was identified as a disease site where disparities exist. The 4C2 leaders examined how geographic and sociodemographic characteristics were correlated to stage at diagnosis and survival in the region and compared those relationships to a sample from the surveillance, epidemiology, and end results (SEER) program. RESULTS: In 4C2, Hispanics were more likely to live in socioeconomically disadvantaged areas relative to their counterparts in the SEER program. These residency patterns were positively correlated with later stage diagnosis and higher mortality. Living in an area with high-income inequality was positively associated with mortality for Non-Hispanic whites in 4C2. In SEER, Hispanics had a slightly higher likelihood of distant stage disease, and disadvantaged socioeconomic status was associated with poor survival. CONCLUSION: CRC interventions in 4C2 will target socioeconomically disadvantaged areas, especially those with higher income inequality, to improve outcomes among Hispanics and Non-Hispanic whites. The collaboration demonstrates how bringing NCI-Designated Cancer Centers together to identify and address common population catchment issues provides opportunity for pooled analyses of small, but important populations, and thus, capitalize on synergies among researchers to reduce cancer disparities.