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Assistência Perinatal , Humanos , Gravidez , Feminino , Assistência Perinatal/normas , Defesa do PacienteRESUMO
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.
Assuntos
Currículo , Internato e Residência , Defesa do Paciente , Aprendizagem Baseada em Problemas , Humanos , Defesa do Paciente/educação , Masculino , Feminino , Educação de Pós-Graduação em Medicina , Adulto , CanadáRESUMO
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.
Assuntos
Consultoria Ética , Ética Clínica , Humanos , Defesa do Paciente , Pessoal de Saúde/ética , Narração , FamíliaRESUMO
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.
Assuntos
Defesa do Paciente , Humanos , Estudos Retrospectivos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Defesa do Paciente/economia , Estados Unidos , Gastos em Saúde/estatística & dados numéricos , Inquéritos e Questionários , Financiamento PessoalRESUMO
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.
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Técnica Delphi , Medicina de Família e Comunidade , Internato e Residência , Avaliação das Necessidades , Humanos , Medicina de Família e Comunidade/educação , Turquia , Masculino , Feminino , Defesa do Paciente/educação , Adulto , Médicos de Família/educação , Competência Clínica , Educação de Pós-Graduação em Medicina/métodos , Determinantes Sociais da Saúde , Pessoa de Meia-IdadeRESUMO
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.
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Cuidadores , Defesa do Paciente , Sarcoma , Humanos , Sarcoma/terapia , Feminino , Masculino , Cuidadores/psicologia , Pessoa de Meia-Idade , Adulto , Inquéritos e Questionários , Pesquisa Biomédica , Idoso , Participação do Paciente , Adulto JovemRESUMO
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.
