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.

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.

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.

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.

In New York State, the Health Care Proxy Law allows patients to designate a person they trust to make medical decisions on their behalf should they lose the capacity to do so. In an Intensive Care Unit (ICU) setting, identification of a health care proxy (HCP) is especially important as patients are at heightened risk of losing decision-making capacity during their clinical course. While our hospital has guidelines to solicit and correctly document the patient\'s HCP information, it is not routinely done. Missing or incomplete HCP documentation is a prevalent issue, with lack of patient education, physical document issues, and time and workflow constraints commonly cited as barriers. We describe the implementation of a small-scale quality improvement project to increase the percentage of completed HCP documentation in our ICU through multi-faceted interventions targeting education, workflow, access, and technology.

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.

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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.
CONCLUSIONS: This IPE experience was instrumental in improving student perspectives regarding poststroke disability.

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.

Non-muscle invasive bladder cancer (NMIBC) is characterised by high rates of recurrence and progression, requiring substantial healthcare resources. In Latin America, the incidence of NMIBC is set to increase due to an aging population and lifestyle changes. To better understand the current challenges for NMIBC treaters and patients, a mixed-methods approach was leveraged combining secondary research with qualitative interviews from healthcare providers in Brazil, Colombia, Mexico and Argentina. Our analysis found that significant challenges persist across the region, particularly due to Bacillus Calmette-Guérin shortages, inconsistent adherence to clinical guidelines and significant socioeconomic disparities for patients accessing healthcare services. Addressing these challenges requires improved patient advocacy, strategic use of clinical trials and better resource distribution to enhance NMIBC management across Latin America.