Trainee advocacy for medical education on the care of people with intellectual and/or developmental disabilities: a sequential mixed methods analysis.

BACKGROUND: Medical trainees (medical students, residents, and fellows) are playing an active role in the development of new curricular initiatives; however, examinations of their advocacy efforts are rarely reported. The purpose of this study was to understand the experiences of trainees advocating for improved medical education on the care of people with intellectual and/or developmental disabilities. METHODS: In 2022-23, the authors conducted an explanatory, sequential, mixed methods study using a constructivist paradigm to analyze the experiences of trainee advocates. They used descriptive statistics to analyze quantitative data collected through surveys. Participant interviews then yielded qualitative data that they examined using team-based deductive and inductive thematic analysis. The authors applied Kern's six-step approach to curriculum development as a framework for analyzing and reporting results. RESULTS: A total of 24 participants completed the surveys, of whom 12 volunteered to be interviewed. Most survey participants were medical students who reported successful advocacy efforts despite administrative challenges. Several themes were identified that mapped to Steps 2, 4, and 5 of the Kern framework: "Utilizing Trainee Feedback" related to Needs Assessment of Targeted Learners (Kern Step 2); "Inclusion" related to Educational Strategies (Kern Step 4); and "Obstacles", "Catalysts", and "Sustainability" related to Curriculum Implementation (Kern Step 5). CONCLUSIONS: Trainee advocates are influencing the development and implementation of medical education related to the care of people with intellectual and/or developmental disabilities. Their successes are influenced by engaged mentors, patient partners, and receptive institutions and their experiences provide a novel insight into the process of trainee-driven curriculum advocacy.

Community health worker perspectives on advocacy: design-based research to develop a digital advocacy training course.

Introduction: While community health workers (CHWs) are well-positioned as health advocates, they frequently lack support and feel undervalued. Advocacy training may prepare CHWs to support communities better. Methods: This study uses a design-based research approach to (1) explore how participation in curriculum-development workshops for a digital advocacy course influenced CHWs' (n = 25) perceptions of advocacy and (2) describe how CHW involvement shaped course development. Data were collected via five discussion groups and seven surveys over six months. Results: Initially, the CHWs perceived themselves as community-advocates but not as self-advocates. They increasingly reflected on the merits of advocating for better working conditions and aspired to greater involvement in decision-making. CHWs reflected positively on their advisory role in shaping the course to improve content acceptability and validity. Discussion: Training efforts to engage CHWs in advocacy must overcome systemic barriers and norms internalized by CHWs that deter them from reaching their full potential as advocates.

Advocacy Connection Team-Now educational program for headache fellows and patients/caregivers: Assessment of educational objectives.

OBJECTIVE: To assess for improvement in comfort in participating in advocacy for migraine and headache disorders and knowledge needed for successful advocacy. BACKGROUND: The Advocacy Connection Team (ACT)-Now program is an educational program offered through Miles for Migraine, a non-profit advocacy organization. It is designed to teach headache fellows and patients advocacy skills. METHODS: In a cross-sectional pre-test-post-test design, the 2021 ACT-Now cohort of 98 participants were administered a set of 11 pre-course survey questions identifying their role (healthcare provider/headache fellow or patient/caregiver), baseline knowledge of migraine-related disability and stigma, and baseline engagement and comfort with advocating. The post-course survey questions were the same as the pre-course questions, with the addition of one question assessing knowledge of migraine-related disability, additional questions addressing comfort levels advocating with insurance and policymakers, as well as creating an advocacy plan. RESULTS: For the pre-course survey, 69 participants responded and for the post-course survey, 40 participants responded. Compared to the pre-course survey, participants were able to correctly identify epidemiological data about migraine following the ACT-Now course (pre-course 46% correct, post-course 58% correct, p = 0.263). There was also an increase in the comfort level of participants in advocacy activities, including the creation of an advocacy action plan (pre-course 23% were "very comfortable" advocating, post-course 63%, p < 0.05). CONCLUSION: These results demonstrate that ACT-Now is effective at improving advocacy skills in a mixed cohort of patients and headache fellows, giving them the skills to create advocacy plans and engage with other patients and physicians, payers, and policymakers to create a more understanding, equitable and compassionate world for persons with migraine and other headache diseases.

An Op-Ed Writing Curriculum for Medical Students to Engage in Advocacy Through Public Writing.

BACKGROUND: Op-ed writing can be a powerful and accessible advocacy tool for physicians, but training is lacking in undergraduate medical education. AIM: To train and engage first-year medical students in op-ed writing. SETTING: Midwestern research-intensive medical school. PARTICIPANTS: All students in a required first-year health policy course in 2021 and 2022. PROGRAM DESCRIPTION: For their health policy course's final assignment, students could opt to write an op-ed on a healthcare issue of their choice. All students received written instruction on op-ed writing. Additionally, they could access a seminar, coaching and editing by peers and faculty, and publication guidance. PROGRAM EVALUATION: Of 179 students over 2 years, 105 chose to write op-eds. Fifty-one attended the seminar, 35 attended peer coaching sessions, 33 accessed structured peer editing, and 23 received faculty assistance. Thirty-eight students submitted a total of 42 op-eds for publication. Twenty-two pieces were published in major outlets and 17 in the university's health policy review. Of the 22 in major outlets, 21 received editing from either peers or faculty. DISCUSSION: An op-ed writing curriculum can be integrated into an existing medical school health policy course, resulting in a high level of engagement and in published op-eds by medical students.

The Case for Advocacy Curricula and Opportunities in Medical Education: Past Examples to Inform Future Instruction.

ABSTRACT: With recent advances in understanding racial, socioeconomic, and mental health issues in medicine and their relation to policy and legislation, medical professionals are increasingly involved in local and national advocacy efforts. At the frontlines of these initiatives are medical students who, in addition to completing required coursework and clinical training, devote themselves to serving patients through civic participation. The burgeoning evidence concerning health care disparities and inequity, along with greater awareness of racial and socioeconomic discrimination, have made advocacy an essential aspect of many students' medical training. Every year, thousands of medical students join national medical advocacy organizations, in addition to regional, state, and local groups. Despite the rich history of medical student involvement in advocacy, there remains much speculation and skepticism about the practice as an essential component of the medical profession. From early initiatives pushing for national health insurance after World War II to encouraging antidiscrimination policies and practices, medical students have been collectively working to create change for themselves and their patients. Through efforts such as banning smoking on airplanes, creating safe syringe programs, and protesting against police brutality, many medical students work tirelessly in advocacy despite minimal educational support or guidance about the advocacy process. Given that medical student advocacy continues to grow and has shown measurable successes in the past, the authors believe that these efforts should be rewarded and expanded upon. The authors examine historical examples of medical student advocacy to suggest ways in which advocacy can be integrated into core medical school curricula and activities. They call attention to opportunities to support students' development of knowledge and skills to facilitate legislative change, expansion of interprofessional collaborations and credit, and curricular updates to promote social and health equity.

Prevalence and Characteristics of Advocacy Curricula in U.S. Medical Schools.

PURPOSE: Recent national events, including the COVID-19 pandemic and protests of racial inequities, have drawn attention to the role of physicians in advocating for improvements in the social, economic, and political factors that affect health. Characterizing the current state of advocacy training in U.S. medical schools may help set expectations for physician advocacy and predict future curricular needs. METHOD: Using the member school directory provided by the Association of American Medical Colleges, the authors compiled a list of 154 MD-granting medical schools in the United States in 2019-2020. They used multiple search strategies to identify online course catalogues and advocacy-related curricula using variations of the terms "advocacy," "policy," "equity," and "social determinants of health." They used an iterative process to generate a preliminary coding schema and to code all course descriptions, conducting content analysis to describe the structure of courses and topics covered. RESULTS: Of 134 medical schools with any online course catalogue available, 103 (76.9%) offered at least 1 advocacy course. Required courses were typically survey courses focused on general content in health policy, population health, or public health/epidemiology, whereas elective courses were more likely to focus specifically on advocacy skills building and to feature field experiences. Of 352 advocacy-specific courses, 93 (26.4%) concentrated on a specific population (e.g., children or persons with low socioeconomic status). Few courses (n = 8) focused on racial/ethnic minorities and racial inequities. CONCLUSIONS: Findings suggest that while most U.S. medical schools offer at least 1 advocacy course, the majority are elective rather than required, and the structure and content of advocacy-related courses vary substantially. Given the urgency to address social, economic, and political factors affecting health and health equity, this study provides an important and timely overview of the prevalence and content of advocacy curricula at U.S. medical schools.

The Missing Chapter: The Education of Surgery and Anesthesiology Trainees as Civic Advocates.

The SARS-CoV-2 pandemic has highlighted existing systemic inequities that adversely affect a variety of communities in the United States. These inequities have a direct and adverse impact on the healthcare of our patient population. While civic engagement has not been cultivated in surgical and anesthesia training, we maintain that it is inherent to the core role of the role of a physician. This is supported by moral imperative, professional responsibility, and a legal obligation. We propose that such civic engagement and social justice activism is a neglected, but necessary aspect of physician training. We propose the implementation of a civic advocacy education agenda across department, community and national platforms. Surgical and anesthesiology residency training needs to evolve to the meet these increasing demands.

An Interprofessional Approach to Teaching Advocacy Skills: Lessons from an Academic Medical-Legal Partnership.

Medical students and educators recognize that preparing the next generation of health leaders to address seemingly intractable problems like health disparities should include advocacy training. Opportunities to acquire the knowledge and skills needed to effectively advocate at the policy level to promote systems-, community-, and population-level solutions are a critical component of such training. But formal advocacy training programs that develop and measure such skills are scarce. Even less common are interprofessional advocacy training programs that include legal and policy experts to help medical students learn such skills. This 2016-2017 pilot study started with a legislative advocacy training program for preclinical medical students that was designed to prepare them to meet with Capitol Hill representatives about a health justice issue. The pilot assessed the impact of adding an interprofessional education (IPE) dimension to the program, which in this case involved engaging law faculty and students to help the medical students understand and navigate the federal legislative process and prepare for their meetings. Results from the pilot suggest that adding law and policy experts to advocacy-focused training programs can improve medical students' advocacy knowledge and skills and increase their professional identity as advocates.

Impact of end-of-life planning on surrogate decision-maker anxiety in the US.

At the end of life, hospice patients frequently rely on surrogate decision makers (SDMs) for healthcare decisions, which creates anxiety among SDMs. This project evaluated whether an educational intervention to create a plan of care for hospice patients would reduce anxiety among SDMs. Before the intervention, immediately after the intervention, and 2 weeks following the intervention SDM anxiety was measured with the Geriatric Anxiety Scale, State Trait Anxiety Inventory-State Anxiety Scale, and one question about decision-making anxiety. Twelve patients (80±14.7 years) and 18 SDMs (60±12.9 years) completed the intervention. Immediately after the intervention SDMs showed a significant decrease (P=0.003) in anxiety. When anxiety was measured 2 weeks post-intervention, anxiety had increased again, and was no longer significantly different from pre-intervention levels. This project demonstrated that an educational intervention in the hospice setting can be effective in creating a short-term decrease to SDM anxiety levels.

Building Patient-Physician Trust: A Medical Student Perspective.

Public trust in physicians has declined over the last 50 years. Future physicians will need to mend the patient-physician trust relationship. In conjunction with the American Medical Association's Accelerating Change in Medical Education initiative, the Mayo Clinic Alix School of Medicine implemented the Science of Health Care Delivery (SHCD) curriculum-a 4-year curriculum that emphasizes interdisciplinary training across population-centered care; person-centered care; team-based care; high-value care; leadership; and health policy, economics, and technology-in 2015. In this medical student perspective, the authors highlight how the SHCD curriculum has the potential to address issues that have eroded patient-physician trust. The curriculum reaches this aim through didactic and/or experiential teachings in health equity, cultural humility and competence, shared decision making, patient advocacy, and safety and quality of care. It is the authors' hope that novel medical education programs such as the SHCD curriculum will allow the nation's future physicians to own their role in rebuilding and fostering public trust in physicians and the health care system.

[The expert patient: a new key stakeholder in the global healthcare system]. / Le patient-expert - Un nouvel acteur clé du système de santé.

TITLE: Le patient-expert - Un nouvel acteur clé du système de santé. ABSTRACT: Dans les maladies rares, l'expertise est limitée, les connaissances restreintes, les parcours de soins incertains et les traitements inexistants ou peu efficaces. Pour améliorer les prises en charge, il est nécessaire de tirer parti de toutes les expertises disponibles, y compris celles des malades, certains d'entre eux étant devenus de véritables patients-experts.

Empowering Students and Influencing Policy Change Through Experiential Public Health Advocacy Education.

BACKGROUND: Public health advocacy is central to the work of many health professionals, including nurses. Although deemed to be a core competency for public health practitioners, courses described in the literature often lack a focus on experiential learning, which is an essential component to acquiring public health advocacy skills. METHOD: This article describes an innovative, 12-week graduate course that provides students with a combination of theory and experiential learning through an opportunity to engage in political advocacy, community mobilization, and media engagement on a current public health issue. RESULTS: An advocacy campaign undertaken by students to increase community access to the overdose reversal medication naloxone is described in light of the current North American overdose epidemic. Key considerations for teaching public health advocacy to facilitate development of nursing courses elsewhere are highlighted. CONCLUSION: Public health advocacy education is important and needs to be expanded both within the nursing profession and across all disciplines. [J Nurs Educ. 2019;58(12):698-703.].

Family physicians and health advocacy: Is it really a difficult fit?

OBJECTIVE: To examine whether family medicine residents and faculty members appreciate the full spectrum of health advocacy as described in articles published in Canadian Family Physician in 2016 and to identify the perceived challenges and enablers of advocating across the entire spectrum. DESIGN: Analysis of a subset of data from a qualitative study using semistructured interviews and focus groups. SETTING: University of Toronto in Ontario. PARTICIPANTS: A total of 9 family medicine faculty members and 6 family medicine residents. METHODS: A subset of transcripts from a 2015 qualitative study that explored family medicine and psychiatry residents' and faculty members' understanding of the CanMEDS-Family Medicine health advocate role were reviewed, guided by interpretive descriptive methodology. MAIN FINDINGS: Results indicated that family medicine physicians and residents were able to identify the full spectrum of advocacy described in the Canadian Family Physician articles and that they valued the role. Further, there was widespread agreement that being a health advocate was linked with their identities as health professionals. The time it takes to be a health advocate was seen as a barrier to being effective in the role, and the work was seen as extremely challenging owing to system constraints. Participants also described a gap in training relating to advocacy at the system level as a challenge. CONCLUSION: Team-based care was seen as one of the most important enablers for becoming involved in the full spectrum of advocacy, as was time for personal reflection.

A realist review of which advocacy interventions work for which abused women under what circumstances.

BACKGROUND: Intimate partner abuse (including coercive control, physical, sexual, economic, emotional and economic abuse) is common worldwide. Advocacy may help women who are in, or have left, an abusive intimate relationship, to stop or reduce repeat victimisation and overcome consequences of the abuse. Advocacy primarily involves education, safety planning support and increasing access to different services. It may be stand-alone or part of other services and interventions, and may be provided within healthcare, criminal justice, social, government or specialist domestic violence services. We focus on the abuse of women, as interventions for abused men require different considerations. OBJECTIVES: To assess advocacy interventions for intimate partner abuse in women, in terms of which interventions work for whom, why and in what circumstances. SEARCH METHODS: In January 2019 we searched CENTRAL, MEDLINE, 12 other databases, two trials registers and two relevant websites. The search had three phases: scoping of articles to identify candidate theories; iterative recursive search for studies to explore and fill gaps in these theories; and systematic search for studies to test, confirm or refute our explanatory theory. SELECTION CRITERIA: Empirical studies of any advocacy or multi-component intervention including advocacy, intended for women aged 15 years and over who were experiencing or had experienced any form of intimate partner abuse, or of advocates delivering such interventions, or experiences of women who were receiving or had received such an intervention. Partner abuse encompasses coercive control in the absence of physical abuse. For theory development, we included studies that did not strictly fit our original criteria but provided information useful for theory development. DATA COLLECTION AND ANALYSIS: Four review authors independently extracted data, with double assessment of 10% of the data, and assessed risk of bias and quality of the evidence. We adopted RAMESES (Realist and meta-narrative evidence syntheses: evolving standards) standards for reporting results. We applied a realist approach to the analysis. MAIN RESULTS: We included 98 studies (147 articles). There were 88 core studies: 37 focused on advocates (4 survey-based, 3 instrument development, 30 qualitative focus) and seven on abused women (6 qualitative studies, 1 survey); 44 were experimental intervention studies (some including qualitative evaluations). Ten further studies (3 randomised controlled trials (RCTs), 1 intervention process evaluation, 1 qualitative study, 2 mixed methods studies, 2 surveys of women, and 1 mixed methods study of women and staff) did not fit the original criteria but added useful information, as befitting a realist approach. Two studies are awaiting classification and three are ongoing.Advocacy interventions varied considerably in contact hours, profession delivering and setting.We constructed a conceptual model from six essential principles based on context-mechanism-outcome (CMO) patterns.We have moderate and high confidence in evidence for the importance of considering both women's vulnerabilities and intersectionalities and the trade-offs of abuse-related decisions in the contexts of individual women's lives. Decisions should consider the risks to the woman's safety from the abuse. Whether actions resulting from advocacy increase or decrease abuse depends on contextual factors (e.g. severity and type of abuse), and the outcomes the particular advocacy intervention is designed to address (e.g. increasing successful court orders versus decreasing depression).We have low confidence in evidence regarding the significance of physical dependencies, being pregnant or having children. There were links between setting (high confidence), and potentially also theoretical underpinnings of interventions, type, duration and intensity of advocacy, advocate discipline and outcomes (moderate and low confidence). A good therapeutic alliance was important (high confidence); this alliance might be improved when advocates are matched with abused women on ethnicity or abuse experience, exercise cultural humility, and remove structural barriers to resource access by marginalised women. We identified significant challenges for advocates in inter-organisational working, vicarious traumatisation, and lack of clarity on how much support to give a woman (moderate and high confidence). To work effectively, advocates need ongoing training, role clarity, access to resources, and peer and institutional support.Our provisional model highlights the complex way that factors combine and interact for effective advocacy. We confirmed the core ingredients of advocacy according to both women and advocates, supported by studies and theoretical considerations: education and information on abuse; rights and resources; active referral and liaising with other services; risk assessment and safety planning. We were unable to confirm the impact of complexity of the intervention (low confidence). Our low confidence in the evidence was driven mostly by a lack of relevant studies, rather than poor-quality studies, despite the size of the review. AUTHORS' CONCLUSIONS: Results confirm the core ingredients of advocacy and suggest its use rests on sound theoretical underpinnings. We determined the elements of a good therapeutic alliance and how it might be improved, with a need for particular considerations of the factors affecting marginalised women. Women's goals from advocacy should be considered in the contexts of their personal lives. Women's safety was not necessarily at greatest risk from staying with the abuser. Potentially, if undertaken for long enough, advocacy should benefit an abused woman in terms of at least one outcome providing the goals are matched to each woman's needs. Some outcomes may take months to be determined. Where abuse is severe, some interventions may increase abuse. Advocates have a challenging role and must be supported emotionally, through provision of resources and through professional training, by organisations and peers.Future research should consider the different principles identified in this review, and study outcomes should be considered in relation to the mechanisms and contexts elucidated. More longitudinal evidence is needed. Single-subject research designs may help determine exactly when effect no longer increases, to determine the duration of longitudinal work, which will likely differ for vulnerable and marginalised women. Further work is needed to ascertain how to tailor advocacy interventions to cultural variations and rural and resource-poor settings. The methods used in the included studies may, in some cases, limit the applicability and completeness of the data reported. Economic analyses are required to ascertain if resources devoted to advocacy interventions are cost-effective in healthcare and community settings.

A pilot evaluation of an advocacy programme on knowledge, empowerment, family-school partnership and parent well-being.

BACKGROUND: Internationally, it has been recognised that parents need to advocate for their children with disabilities to receive services. However, many parents find advocacy difficult because of systemic and logistical barriers. As such, parents of children with disabilities may seek a special education advocate to help them understand their child's rights and secure services. Yet little research has been conducted about programmes to develop special education advocates. METHODS: In this study, we conducted a comparison study to determine the association of an advocacy programme (i.e. the Volunteer Advocacy Project) on a primary outcome (i.e. special education knowledge) and other outcomes (i.e. family-school partnership, empowerment and parent well-being). Specifically, in 2017, 34 participants, all mothers of children with disabilities, were recruited from disability organisations in the USA. Seventeen mothers participated in the intervention group (i.e. the advocacy training), while 17 mothers participated in the wait list control group. The Volunteer Advocacy Project is a 36 hr advocacy training for individuals to gain instrumental and affective knowledge to advocate for their own children with disabilities and for other families. All participants completed a pre-survey and post-survey; only intervention group participants completed a 6-month follow-up survey. RESULTS: Compared with 17 wait list control group participants, the 17 intervention group participants demonstrated improvements in special education knowledge, P = 0.002, η2  = 0.32, and self-mastery, P = 0.04, η2  = 0.15, and decreases in the quality of family-school partnerships, P = 0.002, η2  = 0.32. At the follow-up survey, intervention group participants demonstrated increases in empowerment, P = 0.04, η2  = 0.29, and special education knowledge, P = 0.02, η2  = 0.38. CONCLUSIONS: Implications for research including the need for a randomised controlled trial are discussed; also, practitioners need to evaluate advocacy training programmes regarding their effectiveness.