Boletim Ouvidoria em Dados: agosto 2023

Boletim Ouvidoria em Dados: setembro 2023

Boletim Ouvidoria em Dados: outubro 2023

Boletim Ouvidoria em Dados: novembro 2023

Boletim Ouvidoria em Dados: dezembro 2023

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.

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.

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.

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.

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.

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.

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.

Advocacy in Action: NASN's 2024 Advocacy and Legislative Priorities.

All nurses have a responsibility to advocate. Advocacy is the eighth school nurse standard and can be actualized in many ways. NASN has established advocacy priorities to provide members with strategic advocacy objectives to advance their school nursing practice. One aspect of these priorities is legislative advocacy. The NASN board of directors puts legislative advocacy into action when they visit their Congress members on Capitol Hill. This article describes NASN's advocacy priorities and how school nurse visits to "the Hill" introduces legislative priorities to legislators.

Using Advocacy to Address the Crisis of Children's Mental Health.

Children and youth in the United States are experiencing a mental health crisis that predates the COVID-19 pandemic. Child and adolescent psychiatrists have the knowledge and skillset to advocate for improving the pediatric mental health care system at the local, state, and federal levels. Child psychiatrists can use their knowledge and expertise to advocate legislatively or through regulatory advocacy to improve access to mental health care for youth. Further, including advocacy education in psychiatry and child psychiatry graduate medical education would help empower child psychiatrists to make an impact through their advocacy efforts.

Preparing Trainees for Public Health Advocacy Through Community Partnerships.

This article reviews the existing literature related to medical training in public advocacy and provides the reader with several training examples to consider in a child and adolescent psychiatry fellowship or in combined training programs. Advocacy training embedded within community, forensic, integrated care, school, and many other experiences throughout training provides the skills and tools that the trainee will use in the future when they practice in any setting. This comprehensive training approach aligns with the evolving landscape of child and adolescent mental health where a deep commitment to public health and advocacy is increasingly essential.