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1.
Sci Transl Med ; 16(746): eadn2401, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38718133

RESUMO

The development of new genetic medicines to treat sickle cell disease highlights the need for greater collaboration between researchers and people with lived experiences. Drawing on the adage "Nothing about us, without us," we call for increased investments in community advocacy and engagement.


Assuntos
Anemia Falciforme , Defesa do Paciente , Humanos , Anemia Falciforme/genética , Terapia Genética
2.
J Clin Ethics ; 35(2): 77-84, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38728698

RESUMO

AbstractThis piece discusses several ways in which providers may advocate for patients and their families that go beyond what providers usually do to help their patients. A much more expanded view of advocacy is suggested. Real cases illustrating all interventions suggested are presented, and each is paradigmatic of numerous others. Categories of possible options suggested for expanded advocacy include (1) providers enhancing patients' outcomes when standard treatments have failed, (2) providers taking measures outside those they usually take to benefit patients to a greater extent, and (3) providers sacrificing their own needs more than they customarily do to help their patients still further. The suggested interventions are practical and can be implemented immediately. Taken together, the interventions proposed are also aspirational.


Assuntos
Defesa do Paciente , Humanos , Pessoal de Saúde
3.
J Clin Ethics ; 35(2): 142-146, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38728699

RESUMO

AbstractA long-standing tenet of healthcare clinical ethics consultation has involved the neutrality of the ethicist. However, recent pressing societal issues have challenged this viewpoint. Perhaps now more than ever before, ethicists are being called upon to take up roles in public health, policy, and other community-oriented endeavors. In this article, I first review the concept of professional advocacy and contrast this conceptualization with the role of patient advocate, utilizing the profession of nursing as an exemplar. Then, I explore the status of advocacy in clinical ethics and how this conversation intersects with the existing professional obligations of the bioethicist, arguing that the goals of ethics consultation and ethical obligations of the clinical ethicist are compatible with the role of professional advocate. Finally, I explore potential barriers to professional advocacy and offer suggestions for a path forward.


Assuntos
Eticistas , Defesa do Paciente , Humanos , Bioética , Negociação , Consultoria Ética , Obrigações Morais , Ética Clínica
4.
BMC Med Educ ; 24(1): 491, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38702741

RESUMO

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.


Assuntos
Currículo , Deficiências do Desenvolvimento , Deficiência Intelectual , Humanos , Deficiências do Desenvolvimento/terapia , Defesa do Paciente/educação , Estudantes de Medicina/psicologia , Feminino , Masculino , Educação Médica , Internato e Residência , Inquéritos e Questionários
5.
Am Soc Clin Oncol Educ Book ; 44(3): e433416, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38781556

RESUMO

Health policy influences health and well-being for patients with cancer. Advocating for evidence-based health policies that aim to prevent cancer, promote health, and improve efficiencies in the health care system is crucial to improving care delivery and cancer outcomes nationwide. The role of the ASCO's Government Relations Committee (GRC) is to advocate for policies at a federal and state level that promote high-quality and equitable cancer care, and ASCO volunteer engagement is critical for the success of creating, changing, and adopting policies that support patients with cancer and their care team. Cancer care professionals are uniquely positioned to advocate at all levels of government, local, state, and federal and to serve as invaluable resources for lawmakers as they work to implement policy changes. Lawmakers are highly responsive to cancer care providers as most lawmakers have family or friends who have been diagnosed with cancer. Multiple advocacy strategies that are effective and efficient in their approach have been used, making advocating feasible for cancer care professionals' busy schedule. To improve patient care, ASCO's GRC and ASCO volunteers advocate for increased federal funding for research, greater health care access, value in cancer care, and payment reform. ASCO's GRC has many programs in place to support ASCO members interested in engaging in advocacy to improve the quality of care for their patients and the support for cancer care professionals to thrive in the field.


Assuntos
Atenção à Saúde , Política de Saúde , Neoplasias , Humanos , Estados Unidos , Neoplasias/terapia , Defesa do Paciente , Oncologia
7.
Semin Perinatol ; 48(3): 151901, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38697870

RESUMO

Health policy and quality improvement initiatives exist symbiotically. Quality projects can be spurred by policy decisions, such as the creation of financial incentives for high-value care. Then, advocacy can streamline high-value care, offering opportunities for quality improvement scholars to create projects consistent with evidenced-based care. Thirdly, as pediatrics and neonatology reconcile with value-based payment structures, successful quality initiatives may serve as demonstration projects, illustrating to policy-makers how best to allocate and incentivize resources that optimize newborn health. And finally, quality improvement (QI) can provide an essential link between broad reaching advocacy principles and boots-on-the-ground local or regional efforts to implement good ideas in ways that work practically in particular environments. In this paper, we provide examples of how national legislation elevated the importance of QI, by penalizing hospitals for low quality care. Using Medicaid coverage of pasteurized human donor milk as an example, we discuss how advocacy improved cost-effectiveness of treatments used as tools for quality projects related to reduction of necrotizing enterocolitis and improved growth. We discuss how the future of QI work will assist in informing the agenda as neonatology transitions to value-based care. Finally, we consider how important local and regional QI work is in bringing good ideas to the bedside and the community.


Assuntos
Política de Saúde , Melhoria de Qualidade , Humanos , Recém-Nascido , Estados Unidos , Neonatologia/normas , Medicaid , Leite Humano , Defesa do Paciente , Pasteurização , Enterocolite Necrosante/terapia , Enterocolite Necrosante/prevenção & controle , Enterocolite Necrosante/economia
8.
Curr Oncol ; 31(5): 2582-2588, 2024 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-38785474

RESUMO

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to "AYA Can-Canadian Cancer Advocacy"), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023. Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a "patient ambassador program," and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada.


Assuntos
Neoplasias , Defesa do Paciente , Humanos , Canadá , Neoplasias/terapia , Adolescente , Adulto Jovem , Adulto , Grupo Associado
10.
Soc Sci Med ; 350: 116901, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38688088

RESUMO

In 2020, when COVID-19 patients first recognized their complex and progressive symptoms, patient activists defined "Long Covid" on social media. While patient support groups are by no means new, the predominance of online support groups and those leveraging the power of social media has become a defining characteristic of Long Covid. In this article, we argue that naming Long Covid served as a powerful conduit of legitimacy for patient activists in media, medicine, and policy. We conducted 57 in-depth qualitative interviews with patients (n = 22), clinicians (n = 20), and policy and academic experts (n = 15). We found naming was not a primary area of contention. In contrast, patients found pride and a sense of identity within the terms. Many clinicians struggled with diagnostics because Long Covid lacks clear biological tests, while patients were consistently disappointed by the lack of positive tests and clarity around their symptomatology. The heterogeneity of the Long Covid experience, as well as the diversity of symptoms, further provides opportunities for contestation and disbelief among clinicians and policymakers not only in diagnostics but also in disability rights. Thus, the power of patient activism has transformed how the condition is perceived among and between patients, clinicians, policymakers, and the media in unprecedented ways that will likely have longstanding impacts on how IACCs are viewed in medicine and the public alike.


Assuntos
COVID-19 , Pesquisa Qualitativa , Humanos , Estados Unidos , COVID-19/psicologia , COVID-19/epidemiologia , Masculino , Feminino , Síndrome de COVID-19 Pós-Aguda , Pessoa de Meia-Idade , Mídias Sociais , Adulto , SARS-CoV-2 , Defesa do Paciente , Entrevistas como Assunto , Idoso
13.
J Appl Res Intellect Disabil ; 37(3): e13231, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38561915

RESUMO

BACKGROUND: A multi-phase Canadian study was conducted as part of a large-scale community and academic research partnership focused on understanding and improving the employment experiences of people with intellectual disabilities. METHOD: This multi-method study utilized a sequential approach, using findings from qualitative interviews (n = 28) to inform an online survey (n = 149). Participants were invited to share their experiences with paid employment or with persons with intellectual disabilities. RESULTS: Thematic analysis of data across interview and survey findings resulted in six themes: (1) assumptions and attitudes, (2) knowledge and awareness, (3) accessibility of processes, (4) use of accommodations, (5) workplace relationships, and (6) supports and resources. CONCLUSIONS: A holistic and systemic approach has the potential to improve inclusive employment experiences of people with intellectual disabilities. Action is needed mainly at the policy and employer level to reduce barriers and improve on facilitating measures reinforced by the themes shared in this study.


Assuntos
Pessoas com Deficiência , Deficiência Intelectual , Adulto , Humanos , Defesa do Paciente , Canadá , Emprego
14.
JMIR Public Health Surveill ; 10: e47241, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38573762

RESUMO

BACKGROUND: The VACCELERATE Pan-European Scientific network aims to strengthen the foundation of vaccine trial research across Europe by following the principles of equity, inclusion, and diversity. The VACCELERATE Volunteer Registry network provides access to vaccine trial sites across the European region and supports a sustainable volunteer platform for identifying potential participants for forthcoming vaccine clinical research. OBJECTIVE: The aim of this study was to approach members of patient advocacy groups (PAGs) across Europe to assess their willingness to register for the VACCELERATE Volunteer Registry and their perspectives related to participating in vaccine trials. METHODS: In an effort to understand how to increase recruitment for the VACCELERATE Volunteer Registry, a standardized survey was developed in English and translated into 8 different languages (Dutch, English, French, German, Greek, Italian, Spanish, and Swedish) by the respective National Coordinator team. The online, anonymous survey was circulated, from March 2022 to May 2022, to PAGs across 10 European countries (Belgium, Cyprus, Denmark, France, Germany, Greece, Ireland, Italy, Spain, and Sweden) to share with their members. The questionnaire constituted of multiple choice and open-ended questions evaluating information regarding participants' perceptions on participating in vaccine trials and their willingness to become involved in the VACCELERATE Volunteer Registry. RESULTS: In total, 520 responses were collected and analyzed. The PAG members reported that the principal criteria influencing their decision to participate in clinical trials overall are (1) the risks involved, (2) the benefits that will be gained from their potential participation, and (3) the quality and quantity of information provided regarding the trial. The survey revealed that, out of the 520 respondents, 133 individuals across all age groups were "positive" toward registering in the VACCELERATE Volunteer Registry, with an additional 47 individuals reporting being "very positive." Respondents from Northern European countries were 1.725 (95% CI 1.206-2.468) times more likely to be willing to participate in the VACCELERATE Volunteer Registry than respondents from Southern European countries. CONCLUSIONS: Factors discouraging participants from joining vaccine trial registries or clinical trials primarily include concerns of the safety of novel vaccines and a lack of trust in those involved in vaccine development. These outcomes aid in identifying issues and setbacks in present registries, providing the VACCELERATE network with feedback on how to potentially increase participation and enrollment in trials across Europe. Development of European health communication strategies among diverse public communities, especially via PAGs, is the key for increasing patients' willingness to participate in clinical studies.


Assuntos
Defesa do Paciente , Vacinas , Humanos , Europa (Continente) , França , Alemanha , Ensaios Clínicos como Assunto
16.
Front Public Health ; 12: 1334279, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38660355

RESUMO

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.


Assuntos
Agentes Comunitários de Saúde , Humanos , Agentes Comunitários de Saúde/educação , Feminino , Masculino , Inquéritos e Questionários , Currículo , Adulto , Defesa do Paciente/educação , Pessoa de Meia-Idade , Defesa do Consumidor/educação
18.
Pan Afr Med J ; 47: 64, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38681114

RESUMO

Introduction: rare diseases (RD) are extremely complex health conditions. Persons affected by these conditions in Cameroon are often neglected in society and health systems through the inexistence of policies and programs. In Cameroon, there exists no program or policy conceived to address their needs in terms of access to quality health care, timely and reliable diagnosis, treatments, education, etc. The consequence is that persons living with a RD (PLWRD) and their families do not participate in social life. The unique fate of PLWRD reveals that the principle of social justice and equity is flawed in Cameroon. However, patients, in order to survive in society, rely on patients' organizations (PO) to improve their quality of life (QoL) and advocate for a better consideration in the society. The aim of this paper is to highlight how initiatives from a grassroot perspective like POs can inform decision-makers to address the needs of PLWRD and their families. Methods: the study associated a systematic literature review and semi-structured interviews with parents of children suffering from a RD and who are members of a PO. Through the systematic literature review we highlighted the impact POs have in the development of research on RDs, patient literacy, patient empowerment and advocacy while semi-structured interviews brought out the needs of patients and their families. Results: findings, on the one hand show that, in Cameroon PLWRD face a number of challenges like the incurability of their condition, catastrophic medical expenses, stigmatization and marginalization, etc. and though in POs their QoL still remains poor. On the other hand, where POs are empowered they are key actors in research on RDs and help decision-makers on having a better insight into the type of RD that exists across a geographical area, the sociodemographic profile of patients, etc. for a better management of PLWRD. Conclusion: the study suggests that the ministry of public health should create a network with existing RD POs to adequately meet the needs of PLWRD.


Assuntos
Acessibilidade aos Serviços de Saúde , Qualidade de Vida , Doenças Raras , Camarões , Humanos , Doenças Raras/terapia , Entrevistas como Assunto , Criança , Justiça Social , Feminino , Defesa do Paciente , Qualidade da Assistência à Saúde , Masculino , Atenção à Saúde/organização & administração , Atenção à Saúde/normas , Participação do Paciente
19.
Artigo em Inglês | MEDLINE | ID: mdl-38673406

RESUMO

Medical advocacy has continued to significantly impact quality of life and survivorship outcomes among Latina breast cancer survivors in the United States. However, little is known about the unique experiences of Latina survivors, including the perceived value, process, and context in which they practice medical advocacy. To help address this gap, we conducted a qualitative, secondary analysis of semi-structured focus groups with 18 Latina breast cancer survivors from Chicago, Illinois. Eligible women had to self-identify as (1) female, (2) Latina, (3) 18 years or older, and (4) having a breast cancer diagnosis 5 years ago or more. In total, 61% of participants were 50-59 years old, 83% were born in Mexico, and 100% spoke Spanish. The three emergent themes from the focus groups were (1) the cultural need for Latina advocates and support groups; (2) the process and experiences of becoming a community advocate within Latine culture; and (3) the cultural contexts for advocacy by Latina breast cancer survivors. Latina survivor advocates share strengths of receiving ongoing health education, peer support, and access to resources when being linked to a support group furthering their exposure to role models, increasing their awareness of opportunities in medical advocacy, and providing an entry to participate in medical advocacy.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Grupos Focais , Hispânico ou Latino , Humanos , Neoplasias da Mama/psicologia , Neoplasias da Mama/etnologia , Feminino , Hispânico ou Latino/psicologia , Hispânico ou Latino/estatística & dados numéricos , Pessoa de Meia-Idade , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Defesa do Paciente , Chicago , Adulto , Idoso , Qualidade de Vida
20.
BMC Med Educ ; 24(1): 476, 2024 Apr 30.
Artigo em Inglês | MEDLINE | ID: mdl-38689263

RESUMO

BACKGROUND: Medical curricula include advocacy competencies, but how much physicians engage in advocacy and what enables this engagement is not well characterized. The authors assessed facilitators and barriers to advocacy identified by physician alumni of a reproductive health advocacy training program. METHODS: The authors present secondary results from a mixed methods program evaluation from 2018 to 2020, using alumni data from a cross-sectional survey (n = 231) and in-depth interviews (IDIs, n = 36). The survey measured engagement in policy, media, professional organization, and medical education advocacy and the value placed on the community fostered by the program (eight questions, Cronbach's alpha = 0.81). The authors estimated the association of community value score with advocacy engagement using multivariable Poisson regression to estimate prevalence ratios and analyzed IDI data inductively. RESULTS: Over one third of alumni were highly engaged in legislative policy (n = 90, 39%), professional organizations (n = 98, 42%), or medical education (n = 89, 39%), with fewer highly active in media-based advocacy (n = 54, 23%) in the year prior to the survey. Survey and IDI data demonstrated that passion, sense of urgency, confidence in skills, and the program's emphasis on different forms of advocacy facilitated engagement in advocacy, while insufficient time, safety concerns, and sense of effort redundancies were barriers. The program community was also an important facilitator, especially for "out loud" efforts and for those working in environments perceived as hostile to abortion care (e.g., alumni in hostile environments with high community value scores were 1.8 times [95% CI 1.3, 2.6] as likely to report medium/high levels of media advocacy compared to those with low scores after adjusting for age, gender, and clinical specialty). CONCLUSION: Physician advocacy training curricula should include both skills- and community-building and identify a full range of forms of advocacy. Community-building is especially important for physician advocacy for reproductive health services such as abortion care.


Assuntos
Liderança , Saúde Reprodutiva , Humanos , Saúde Reprodutiva/educação , Estudos Transversais , Feminino , Masculino , Avaliação de Programas e Projetos de Saúde , Defesa do Paciente , Adulto , Currículo , Médicos/psicologia , Engajamento do Médico
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