Assessing resident experience of a new experiential learning health advocacy curriculum: a mixed methods study.

BACKGROUND: Health Advocacy is considered one of the most difficult skills to teach. Many medical learners feel ill-equipped in social competencies and identify it as a significant gap in their medical training. Experiential learning has recently been emerging as a more effective method to teach health advocacy. The Post Graduate Medical Education (PGME) Health Advocacy Day is a new experiential learning curriculum designed to teach important competencies of health advocacy and social accountability to post-graduate medical residents at the University of Ottawa in Ottawa, Canada. The objective of this mixed-methods study was to assess resident experiences. METHODS: Second-year trainees from all adult residency programs attended the Advocacy Day as part of a mandatory academic day. All participants completed a mandatory pre-and post-session quiz to assess knowledge of key topics before and after the course. We also distributed a voluntary survey to all participants and invited residents to participate in semi-structured interviews to provide feedback on the course. We used descriptive statistics to analyze quiz scores and survey results and conducted a paired t-test of pre and post-test quiz scores. We also performed a thematic analysis of qualitative feedback, specifically survey comments and semi-structured interviews. RESULTS: One hundred and eighty-three residents participated in the Advocacy Day and 112 (61.2%) completed the post-course survey. Ten residents volunteered to be interviewed. Respondents were generally satisfied by the session and felt it was of good quality. Most residents felt the course enhanced their ability to advocate for individual patients or communities (N = 80; 71.5%) and understand patients and families' lived experience with illness (N = 87; 77.5%). Most residents also felt the course improved their knowledge of the impact of social determinants of health (N = 91; 81.2%) and increased their awareness of local resources that can support patients and their families (N = 88; 78.3%). Visiting community sites in-person and meeting persons with lived experiences were highlighted as the most valuable components of the course. CONCLUSION: Experiential learning can be integrated within post-graduate medical curricula to teach health advocacy competencies. Future studies should examine the longitudinal impact of the curricula, to determine whether shifts in perspectives persist over time.

Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership.

BACKGROUND: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics. METHODS: In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey. RESULTS: In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%). CONCLUSIONS: This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.

Receiving Clinical Ethics Consultation Services.

This symposium includes twelve personal narratives from those who have received clinical ethics consultation (CEC) services as a healthcare provider, patient, family member, or patient advocate. Three commentaries on these narratives are also included, authored by experts and scholars in bioethics, healthcare ethics consultation and certification, narrative medicine, and policy. The goal of this symposium is to call attention to the experiences of people who have received clinical ethics consultation (CEC) services as a healthcare provider, patient, family member, or patient advocate.

Utilizing a patient advocacy-led clinical network to engage diverse, community-based sites in implementation-effectiveness research.

BACKGROUND: Increased engagement with community-based practices is a promising strategy for increasing clinical trials access of diverse patient populations. In this study we assessed the ability to utilize a patient-advocacy organization led clinical network to engage diverse practices as field sites for clinical research. METHODS: GO2 for Lung Cancer led recruitment efforts of 17 field sites from their Centers of Excellence in Lung Cancer Screening Network for participation in an implementation-effectiveness trial focused on smoking cessation integration into screening programs for lung cancer. Sites were engaged by one of three methods: 1) Pre-Grant submission of letters of support, 2) a non-targeted study information dissemination campaign to network members, and 3) proactive, targeted outreach to specific centers informed by previously submitted network member data. Detailed self-reported information on barriers to participation was collected from centers that declined to join the study. RESULTS: Of 17 total field sites, 16 were recruited via the targeted outreach campaign and 1 via pre-grant letter of support submission. The sites covered 13 states and 4 United States geographic regions, were varied in annual screening volumes and years of screening program experience and were predominantly community-based practices (10 of 17 sites). The most reported reason (by 33% of sites) for declining to participate as a field site was inadequate staffing bandwidth for trial activities. This was especially true in community-based programs among which it was reported by 45% as a reason for declining. CONCLUSIONS: Our results suggest that this model of field site recruitment leveraging an existing partnership between an academic research team and an informal clinical network maintained by a disease-specific patient advocacy organization can result in engagement of diverse, community-based field sites. Additionally, reported barriers to participation by sites indicate that solutions centered around providing additional resources to enable greater capacity for site staff may increase community-practice participation in research.

Disparate Patient Advocacy When Facing Unaffordable and Problematic Medical Bills.

Importance: People in the US face high out-of-pocket medical expenses, yielding financial strain and debt. Objective: To understand how households respond to medical bills they disagree with or cannot afford. Design, Setting, and Participants: A retrospective cohort study was carried out using a survey fielded between August 14 and October 14, 2023. The study included a random sample of adult (aged ≥18 years) survey respondents from the Understanding America Study (UAS). Participant responses were weighted to be nationally representative. The analysis took place from November 3, 2023, through January 8, 2024. Main Outcomes and Measures: Respondents reported if their household received a medical bill that they could not afford or did not agree with in the prior 12 months, and if anyone contacted the billing office regarding their concerns. Those who did reach out were asked about their experience and those who did not were asked why. Results: The survey was sent to 1233 UAS panelists, of which 1135 completed the survey, a 92.1% cooperation rate. Overall, 1 in 5 of the 1135 respondents received a medical bill that they disagreed with or could not afford. Leading bill sources were physician offices (66 [34.6%]), emergency room or urgent care (22 [19.9%]), and hospitals (31 [15.3%]), and 136 respondents (61.5%) contacted the billing office to address their concern. A more extroverted and less agreeable personality increased likelihood of reaching out. Respondents without a college degree, lower financial literacy, and the uninsured were less likely to contact a billing office. Among those who did not reach out, 55 (86.1%) reported that they did not think it would make a difference. Of those who reached out, 37 (25.7%) achieved bill corrections, better understanding (16 [18.2%]), payment plans (18 [15.5%]), price drop (17 [15.2%]), financial assistance (10 [8.1%]), and/or bill cancellation (6 [7.3%]), while 32 (21.8%) said that the issue was unresolved and 23.8% reported no change. These outcomes aligned well with respondents' billing concerns with financial relief for 75.8% of respondents reaching out about an unaffordable bill, bill corrections for 73.7% of those who thought there was mistake, and a price drop for 61.8% of those who negotiated. Conclusions and Relevance: This cross-sectional survey of a representative sample of patients in the US found that most respondents who self-advocated achieved bill corrections and payment relief. Differences in self-advocacy may be exacerbating socioeconomic inequalities in medical debt burden, as those with less education, lower financial literacy, and the uninsured were less likely to self-advocate. Policies that streamline the administrative burden or shift it from patients to the billing clinician may counter these disparities.

Educational needs assessment for health advocate role in family medicine residency training in Turkey: A Delphi study.

BACKGROUND: Health advocacy (HA) involves purposeful actions to inform, mobilise, and organise activities to address social determinants of health affecting individuals or communities. It is a fundamental component of medical practice, deemed mandatory by professional and educational bodies. Therefore, including health advocacy training in pre- and post-graduate medical education is crucial. OBJECTIVES: In this study, we aimed to determine the need for HA training for family physicians (FPs) based on expert opinions. METHODS: We conducted a modified Delphi study with 105 academic experts and active FPs to explore HA training needs. Using a three-round technique, experts first answered five open-ended questions on HA competencies, teaching and assessment methods, learning environments, and integration in residency training. In the second round, statements from the responses were rated on a 5-point Likert scale, in the third round, statements below the 85% consensus level were revised and re-evaluated. RESULTS: The panel consisted of 41 experts (33 academicians, 8 practitioners) who accepted the invitation and completed the study. At the end of the three rounds, consensus was reached on 38 statements for HA competencies, 15 for teaching methods, 8 for assessment methods, and 20 for integration for HA training. CONCLUSION: Competencies for the HA role are very broad in perspective and show commonalities with the FPs' 'professional', 'expert' and 'leader' roles. Longitudinally integration of the HA training into the national 'Family Medicine Residency Training Core Curriculum' through participatory processes and training of FM trainers in HA is strongly recommended.

The competencies expected for the health advocacy role of the family physicians show commonalities with the family physicians' 'professional', 'expert' and 'leader' roles.It is important to longitudinally integrate health advocacy training into the family medicine residency training core curriculum at the national level.

How Is Access to Legal Resources and Advocacy Foundational to Health Justice?

Health justice as a movement incorporates research about how to more effectively leverage law, policy, and institutions to dismantle inequitable power distributions and accompanying patterns of marginalization that are root causes of health inequity. Legal advocacy is key to health justice because it addresses patients' health-harming legal needs in housing, public benefits, employment, education, immigration, domestic violence, and other areas of law. In medical-legal partnerships, lawyers and clinicians are uniquely positioned to jointly identify and remove legal barriers to patients' health, advocate for structural reform, and build community power.

Productive Messaging to Promote Youth Mental Well-Being and Positive Development in Clinical and Advocacy Settings.

In the adolescent mental health crisis, negative narrative communication has unitended consequences. Supportive communication involves reframing communications to find a new narrative that does not evoke biases. This narrative must emphasize agency and highlight the strengths, potential, and common experiences of young people. It is clear that supporting positive development and well-being is an "us" endeavor. There is a place in this communication strategy for pediatric professionals to address young people, caregivers, other health care professionals, and the community. The science of framing helps us shape a more supportive and productive discourse.

Developing Disability Advocates Through Deliberate Interprofessional Conversations Regarding Quality of Life After Stroke.

OBJECTIVE: Stroke can result in significant mental and physical impairment. Training health care professionals on effective strategies for mitigating stroke-related quality-of-life issues is crucial in facilitating comprehensive stroke management. This study aimed to evaluate the impact of an interprofessional education (IPE) experience on students' attitudes regarding poststroke disability. METHODS: In this pre-post interventional study, pharmacy and medical students received an electronic patient chart and a store-and-forward video depicting physical and cognitive impairment in a patient with stroke. Students were instructed to discuss the acute management and postdischarge needs of the patient from an advocacy perspective. After the IPE experience, students completed the Student Perceptions of Interprofessional Clinical Education-Revised, version 2 and an unvalidated disability attitudes survey. The surveys were analyzed using a paired t test. In addition, students reflected on the prompt, "What are some things you had NOT considered prior to this IPE?" RESULTS: A total of 708 students completed the surveys. After IPE, there was a significant improvement in all domains of the Student Perceptions of Interprofessional Clinical Education-Revised, version 2. On the disability survey, there was significant improvement on all statements, including "rate your comfort with…": "discussing the expected disabilities associated with new-onset stroke" and "discussing strategies for improving the quality of life of a patient who has long-term disabilities." On the self-reflections, 31.7% (n = 211) had not considered the need for poststroke care services before this IPE. CONCLUSION: This IPE experience was instrumental in improving student perspectives regarding poststroke disability.

The Crucial Role of Patient Advocates in Pediatric Oncology Research-Insights From ACCELERATE.

This Viewpoint explores the important role that patient advocates play in pediatric oncology as exemplified by ACCELERATE, a multiparty collaboration that centers advocate involvement in pediatric oncology research.

The Outpatient Endovascular & Interventional Society (OEIS)-The Voice of Advocacy for the OBL: Origins, Principles, and Historical Perspective.

The physician office offering imaging guided endovascular and minimally invasive interventional procedures is often referred to as an OBL (office based lab), OIS (office interventional suite), or OES (office endovascular suite). Initially, OBL's depended upon the national societies of interventional radiology (SIR), vascular surgery (SVS) and interventional cardiology (SCAI) to advocate for them. However, the OBL space needed a voice dedicated to advocating for the appropriate reimbursement of procedures in the OBL to allow the OBL to survive as a viable site of service and become integral to healthcare delivery in the US healthcare system. This need led to the formation of the Outpatient Endovascular & Interventional Society (OEIS). The society is multispecialty and ensures safety in outpatient care in all sites of service while maintaining a focus on the OBL. The mission of the OEIS is to advocate for patients to have the ability to choose their provider and be able to receive safe and effective healthcare in a more friendly and far less costly site of service for them.

Advocacy and Health Equity: The Role of the Pediatric Pulmonologist.

Pediatric pulmonologists have the expertise to be advocates in many areas that affect the respiratory health of children. This article provides an overview of selected advocacy topics related to health equity and provides key examples that can improve child respiratory health in the clinical encounter and beyond.

Trail Magic.

In this narrative medicine essay, an obstetrician-gynecologist describes a day in her life of crossing state lines to provide abortion care for people from all over the Southeast US in the post-Dobbs era.

Pharmaceutical company funding of cancer patient advocacy organizations in the Netherlands.

BACKGROUND: Financial conflicts of interest (FCOI) of medical professionals and associated organizations with pharmaceutical companies (pharma) might contribute to the use of low value oncological treatments. Value criteria for oncological drug approvals in the Netherlands have recently become more stringent leading to objections by cancer patient advocacy organizations (cPAOs). Considering the importance of cPAOs input in cancer patient care we analyzed whether pharma funding of cPAOs occurs in the Netherlands. METHODS: The cPAO websites and available annual reports were evaluated for disclosure of pharma funding for the years 2021 and 2022. Also, data from the Dutch Healthcare Transparency Registry (DHTR) were extracted. RESULTS: Twenty-one of 34 (61.8 %) cPAOs received pharma funding (with 20 registered in the DHTR), and for 13 (29.4 %) cPAOs no reporting of pharma funding could be found. Three of the cPAOs disclosed pharma funding directly on their main website. Online educational material was available from 22 cPAOs on their websites with pharma funding disclosed on the educational material in 5. The total registered amount of pharmaceutical funding was €667,232.00 in 2021 and €536,098.00 in 2022. The median (and interquartile ranges) DHTR registered amount of support per cPAO that received funding in the studied period was €23,799.50 (14,823.75-84,663.30). The most common funding category as defined in the DHTR was project sponsorship. CONCLUSIONS: Financial support by the pharmaceutical industry is common for Dutch cPAOs. Given the importance of cPAOs and their objective input in the societal debate on the availability of cancer drugs, the potential influence of pharma sponsoring should be critically evaluated.

Food and Drug Administration v Alliance for Hippocratic Medicine-A Cautious Win for Reproductive Health Care and FDA Authority.

This Viewpoint discusses the recent US Supreme Court ruling allowing mifepristone­a drug used in medication abortion­to be widely available in the US, summarizes the history of challenges to the availability of mifepristone, and highlights reasons for concerns that remain after the Court's current ruling.

Exploring the relationship between spiritual care and patient advocacy of nurses from generations X, Y and Z working in intensive care clinics: A cross-sectional study.

OBJECTIVE: To determine the relationship between spiritual care and patient advocacy across three generations of nurses working in intensive care units. DESIGN: Cross-sectional survey. METHODS: Data collection took place from July to August 2022 with 120 nurses in Turkey. Data collection tools included the Spiritual Caregiving Competency Scale, the Spirituality and Spiritual Care Assessment Scale, and the Patient Advocacy Scale for Nurses. Data on nurses' demographics were evaluated using descriptive statistical methods (number, percentage, mean, standard deviation). Independent sample t-test, one-way ANOVA, Pearson correlation, and linear multiple regression analysis were used to evaluate the relationships between variables, with results reported as 95% confidence intervals (CI). RESULTS: More than half of the nurses were from Generation Y (39.2 %) and Generation Z (42.5 %). Generation Z's mean patient advocacy score (156.96 ± 23.16) was statistically significantly higher than Generation X's (139.32 ± 34.26). We determined that the spiritual competence scale communication sub-dimension score of Generation Y nurses working between 1-10 years was higher than that of Generation Z nurses. Additionally, as the patient advocacy scores of all generations increased, so did spiritual competence scores. CONCLUSION: The study found differences in patient advocacy and spiritual care competencies between generations. Thus, we recommend organizing courses, seminars, and in-service training on patient advocacy and spiritual care for intensive care nurses. IMPLICATIONS FOR CLINICAL PRACTICE: This study estimates nurses' spiritual care competencies and patient advocacy levels from different generations and sheds light on the literature to eliminate differences in care between generations in nursing practices that evolve and change over time. It is recommended that courses, seminars, in-service training, spiritual activities, and interactive meetings be organized to encourage the participation of intensive care nurses to minimize the differences in spiritual care and patient advocacy among all generations of intensive care nurses.