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1.
Ann Intern Med ; 2024 Jul 30.
Artículo en Inglés | MEDLINE | ID: mdl-39074368

RESUMEN

Respect for the scientific process and a diversity of views; open discourse and debate based on principles of ethics, best available evidence, and scientific inquiry and integrity; and an understanding of evidence gaps and uncertainty and how to communicate about them are important values in the advancement of science and the practice of medicine. Physicians often must make decisions about their recommendations to patients in the face of scarce or conflicting data. Are these characteristics of medicine and science widely understood and effectively communicated among members of the profession and to patients and the public? Issues of scientific integrity are longstanding, but COVID-19 brought them to the forefront, in an environment that was sometimes characterized by communication missteps as guidance came and went-or changed-quickly. Today, is open debate flourishing? Have some debates shed more heat than light? Are people losing confidence in science and medicine? In health care institutions? The American College of Physicians explores these issues and offers guidance in this position paper.

2.
Ann Intern Med ; 177(7): 964-967, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38830215

RESUMEN

Internal medicine physicians are increasingly interacting with systems that implement artificial intelligence (AI) and machine learning (ML) technologies. Some physicians and health care systems are even developing their own AI models, both within and outside of electronic health record (EHR) systems. These technologies have various applications throughout the provision of health care, such as clinical documentation, diagnostic image processing, and clinical decision support. With the growing availability of vast amounts of patient data and unprecedented levels of clinician burnout, the proliferation of these technologies is cautiously welcomed by some physicians. Others think it presents challenges to the patient-physician relationship and the professional integrity of physicians. These dispositions are understandable, given the "black box" nature of some AI models, for which specifications and development methods can be closely guarded or proprietary, along with the relative lagging or absence of appropriate regulatory scrutiny and validation. This American College of Physicians (ACP) position paper describes the College's foundational positions and recommendations regarding the use of AI- and ML-enabled tools and systems in the provision of health care. Many of the College's positions and recommendations, such as those related to patient-centeredness, privacy, and transparency, are founded on principles in the ACP Ethics Manual. They are also derived from considerations for the clinical safety and effectiveness of the tools as well as their potential consequences regarding health disparities. The College calls for more research on the clinical and ethical implications of these technologies and their effects on patient health and well-being.


Asunto(s)
Inteligencia Artificial , Relaciones Médico-Paciente , Humanos , Estados Unidos , Confidencialidad , Registros Electrónicos de Salud , Sociedades Médicas , Atención a la Salud/normas , Medicina Interna , Política de Salud , Atención Dirigida al Paciente/normas , Aprendizaje Automático
3.
Ann Intern Med ; 176(9): 1245-1250, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37665984

RESUMEN

The determination of a patient's death is of considerable medical and ethical significance. Death is a biological concept with social implications. Acting with honesty, transparency, respect, and integrity is critical to trust in the patient-physician relationship, and the profession, in life and in death. Over time, cases about the determination of death have raised questions that need to be addressed. This American College of Physicians position paper addresses current controversies and supports a clarification to the Uniform Determination of Death Act; maintaining the 2 current independent standards of determining death, cardiorespiratory and neurologic; retaining the whole brain death standard; aligning medical testing with the standards; keeping issues about the determination of death separate from organ transplantation; reaffirming the importance and role of the dead donor rule; and engaging in educational efforts for health professionals, patients, and the public on these issues. Physicians should advocate for policies and practices on the determination of death that are consistent with the profession's fundamental and timeless commitment to individual patients and the public.


Asunto(s)
Encéfalo , Médicos , Humanos , Estados Unidos , Muerte Encefálica/diagnóstico , Escolaridad , Personal de Salud
4.
Ann Intern Med ; 176(11): 1516-1519, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37903364

RESUMEN

The relationship of health to rights or human rights is complex. Although many find no right of any kind to health or health care, and others view health care as a right or human right, the American College of Physicians (ACP) instead sees health as a human right. The College, in the ACP Ethics Manual, has long noted the interrelated nature of health and human rights. Health as a human right also has implications for the social and structural determinants of health, including health care. Any rights framework is imperfect, and rights, human rights, and ethical obligations are not synonymous. Individual physicians and the profession have ethical obligations to patients, and these obligations can go beyond matters of rights. Society, too, has responsibilities-the equitable and universal access to appropriate health care is an ethical obligation of a just society. By recognizing health as a human right based in the intrinsic dignity and equality of all patients and supporting the patient-physician relationship and health systems that promote equitable access to appropriate health care, the United States can move closer to respecting, protecting, and fulfilling for all the opportunity for health.


Asunto(s)
Derechos Humanos , Médicos , Humanos , Estados Unidos , Atención a la Salud
5.
Oncologist ; 28(7): e585-e587, 2023 07 05.
Artículo en Inglés | MEDLINE | ID: mdl-37218071

RESUMEN

In Colorado, medical aid in dying (MAiD) is legal, allowing a terminally ill person to request a prescription and self-administer a medication to end their life. Such requests are granted under certain circumstances, including a malignant neoplasm diagnosis, with a goal of peaceful death. This study examined differences in attitudes and actual participation in MAiD between oncologists and non-oncologists, using data from a recent survey of physicians regarding MAiD.


Asunto(s)
Médicos , Suicidio Asistido , Humanos , Colorado , Encuestas y Cuestionarios , Enfermo Terminal , Canadá
6.
J Gen Intern Med ; 37(13): 3426-3434, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35790666

RESUMEN

BACKGROUND: There is an urgent need to identify and address factors influencing uptake and equitable access to monoclonal antibody (mAb) treatment for high-risk outpatients with COVID-19. OBJECTIVE: To assess clinician knowledge, beliefs, and experiences regarding obtaining mAb treatment for eligible patients. DESIGN AND PARTICIPANTS: Survey of clinicians (N = 374) practicing in the state of Colorado who care for patients with COVID-19 in primary care, emergency medicine, and other clinical settings. MAIN MEASURE(S): Diffusion of innovation theory concepts including knowledge, perceived strength of evidence, barriers, and experience with, ease of use, preparedness, and feasibility, appropriateness, and acceptability of mAb referral systems and processes. KEY RESULTS: Most respondents indicated little to no knowledge about mAb therapies for COVID-19 (67%, 74%, 77%, for bamlanivimab, bamlanivimab+etesivimab, and casirivimab+imdevimab, respectively). About half reported little to no familiarity with eligibility criteria (50.9%) and did not know the strength of evidence (31%, 43%, 52%, for bamlanivimab, bamlanivimab+etesivimab, and casirivimab+imdevimab, respectively). Lack of knowledge or confidence in treatment was a top barrier to mAbs use; other barriers included complicated referral processes, patients not eligible when seen, and out-of-pocket costs concerns. Respondents rated four mAb referral steps as generally acceptable, appropriate, and feasible to complete in their primary outpatient clinical setting. Only 24% indicated their clinical setting was very prepared to facilitate referrals, 40% had ever referred a patient for mAbs, and 43% intended to refer a patient in the next month. CONCLUSIONS: Clinician education on strength of evidence and eligibility criteria for mAbs is needed. However, education alone is not sufficient. Given the urgent need to rapidly scale up access to treatment and reduce hospitalizations and death from COVID-19, more efficient, equitable systems and processes for referral and delivery of care, such as those coordinated by health systems, public health departments, or disaster management services, are warranted.


Asunto(s)
Tratamiento Farmacológico de COVID-19 , Pacientes Ambulatorios , Anticuerpos Monoclonales/uso terapéutico , Anticuerpos Monoclonales Humanizados , Anticuerpos Neutralizantes , Humanos
7.
J Gen Intern Med ; 37(13): 3310-3317, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35018562

RESUMEN

BACKGROUND: Approximately 20% of the US population live in states where MAiD is a legal, though highly contentious, practice. Little generalizable data exists on the experiences of MAiD providers who comprise a small, and intentionally hidden, population. OBJECTIVE: To examine the nature, extent, and consequences of physicians' participation in MAiD. DESIGN: An anonymous, multi-wave, mailed survey (RR= 55%). PARTICIPANTS: An enriched sample (n=583) of Colorado physicians caring for potential MAiD patients. MAIN MEASURES: Physician willingness, preparedness, and participation in a continuum of MAiD activities. Other outcomes include the effects of providing MAiD and the barriers physicians face related to MAiD. KEY RESULTS: Overall, 81.1% of respondents were willing to discuss MAiD with a patient, 88.3% to refer for MAiD, 46.3% to be a consultant, and 28.1% to be an attending. Fewer felt prepared to discuss MAiD (54.4%), provide a MAiD referral (62.8%), be a consultant (30.7%), or be an attending (18.0%). More than half of respondents (52.3%) had discussed MAiD with a patient, 27.3% provided a MAiD referral, 12.8% had been a MAiD consultant, and 8.5% had been a MAiD attending. Among MAiD consultants and attendings, 75% reported that their most recent MAiD case was emotionally fulfilling and professionally rewarding, though 75% also reported that it was time consuming and 46.9% reported that it was ethically challenging. Common barriers to physician participation in MAiD include lack of knowledge about MAiD (46.8%), the emotional (45.6%) and time (41.7%) investments, and ethical concerns (41.7%). CONCLUSIONS: Many physicians in our sample are both willing and prepared to discuss MAiD with patients and to provide MAiD referrals. Fewer are prepared and willing to serve as an attending or consultant and fewer have provided these services. MAID consultants and attendings largely report the experience to be emotionally fulfilling and professionally rewarding, but all respondents reported multiple barriers to participation.


Asunto(s)
Médicos , Suicidio Asistido , Actitud del Personal de Salud , Canadá , Colorado , Humanos , Médicos/psicología , Encuestas y Cuestionarios
8.
Ann Intern Med ; 174(6): 844-851, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33721520

RESUMEN

The environment in which physicians practice and patients receive care continues to change. Increasing employment of physicians, changing practice models, new regulatory requirements, and market dynamics all affect medical practice; some changes may also place greater emphasis on the business of medicine. Fundamental ethical principles and professional values about the patient-physician relationship, the primacy of patient welfare over self-interest, and the role of medicine as a moral community and learned profession need to be applied to the changing environment, and physicians must consider the effect the practice environment has on their ethical and professional responsibilities. Recognizing that all health care delivery arrangements come with advantages, disadvantages, and salient questions for ethics and professionalism, this American College of Physicians policy paper examines the ethical implications of issues that are particularly relevant today, including incentives in the shift to value-based care, physician contract clauses that affect care, private equity ownership, clinical priority setting, and physician leadership. Physicians should take the lead in helping to ensure that relationships and practices are structured to explicitly recognize and support the commitments of the physician and the profession of medicine to patients and patient care.


Asunto(s)
Empleo/ética , Ética Médica , Médicos/ética , Administración de la Práctica Médica/ética , Profesionalismo , Contratos/ética , Planes de Aranceles por Servicios , Humanos , Relaciones Médico-Paciente , Práctica Privada/ética , Derivación y Consulta/ética , Reembolso de Incentivo , Estados Unidos , Seguro de Salud Basado en Valor
9.
BMC Palliat Care ; 21(1): 74, 2022 May 16.
Artículo en Inglés | MEDLINE | ID: mdl-35578262

RESUMEN

BACKGROUND: Delivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement is not only an ethical obligation, it also raises ethical challenges of its own. We conducted a qualitative study to understand ethical challenges and potential solutions when engaging patients and families in EOLPC research. METHODS: We recruited and interviewed 20 clinical investigators and 22 patients or family caregivers through the Palliative Care Research Cooperative Group (PCRC). Interview transcripts were analyzed using constructivist grounded theory methodology. Analysis sought to identify ethical challenges and potential solutions, as well as to synthesize findings into practical recommendations tailored to engaging patients and families in EOLPC research. RESULTS: Our study identified 8 ethical challenges considered unique to the EOLPC research context and 11 potential solutions to these challenges. The most frequently described ethical challenges included the need to minimize burdens of engagement for patients and caregivers, challenges of dealing with death and illness, and paternalism or "gatekeeping" (i.e., withholding the opportunity to participate from patients or caregivers). Investigators and patients or family caregivers conceptualized ethics challenges differently; several issues appeared to fall outside a traditional research ethics paradigm and more into the ethics of relationships. We synthesized these findings into 4 practical recommendations hypothesized to support authentic engagement. CONCLUSIONS: Engaging patients and families in EOLPC research can raise unique ethical challenges. These challenges can be overcome to empower participation, minimize the unique burdens of EOLPC, and promote diversity. Whereas traditional research ethics tend to emphasize protecting research participants who may be vulnerable, an ethics approach based on authentic engagement that explores what it means for investigators and patients or family caregivers to be in a relationship may be needed. Future research is needed to explore this approach and test these recommendations in practice.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Muerte , Humanos , Cuidados Paliativos/métodos , Investigación Cualitativa
10.
Disasters ; 46(2): 301-328, 2022 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-34309056

RESUMEN

Active conflict settings constitute challenging operating environments for humanitarian health organisations and workers. An emerging feature of some conflicts is direct violence against health workers, facilities, and patients. Since the start of the war in 2011, Syria has endured extreme and deliberate violent attacks on health facilities and workers. This paper reports on the findings from a qualitative study that examined the lived experiences of Syrian humanitarian health workers facing extreme ethical challenges and coping with moral distress. In-depth interviews were carried out with 58 front-line health workers in north-western and southern Syria. Participants described a number of ethical and operational challenges experienced while providing services in extreme conditions, as well as strategies used to deal with them. The complex intersection of personal and organisational challenges is considered and findings are linked to key ethical and humanitarian principles. Both practical recommendations and action steps are provided to guide humanitarian health organisations.


Asunto(s)
Personal de Salud , Violencia , Humanos , Principios Morales , Investigación Cualitativa , Siria
11.
J Gen Intern Med ; 36(9): 2829-2835, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-34076842

RESUMEN

Suicide is a major global public health issue, and in recent years, there has been increasing recognition of the problem of physician suicide. This American College of Physicians policy paper examines, from the perspective of ethics, the issues that arise when individuals and institutions respond to physician suicides and when they engage in broader efforts aimed at physician suicide prevention. Emphasizing the medical profession as a unique moral community characterized by ethical and professional commitments of service to patients, each other, and society, this paper offers guidance regarding physician suicide and the role of a healing community. The response to an individual physician suicide should be characterized by respect and concern for those who are grieving, the creation of a supportive environment for suicide loss survivors, and careful communication about the event. Because suicide is a complex problem, actions aimed at preventing suicide must occur at the individual, interpersonal, community, and societal levels. The medical community has an obligation to foster a culture that supports education, screening, and access to mental health treatment, beginning at the earliest stages of medical training.


Asunto(s)
Médicos , Prevención del Suicidio , Ética Médica , Humanos , Principios Morales , Relaciones Médico-Paciente , Políticas , Estados Unidos/epidemiología
12.
J Gen Intern Med ; 36(11): 3537-3540, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34013471

RESUMEN

As the extent of health disparities in the USA has been revealed, particularly during the COVID-19 pandemic, physicians have increasingly attended to their roles as advocates for their patients and communities. This article presents "spheres of influence" as a concept that can help physicians think strategically about how to build upon their clinical work and expertise to promote equity in medicine. The physician's primary sphere of influence is in direct patient care. However, physicians today often have many other roles, especially within larger health care institutions in which physicians often occupy positions of authority. Physicians are therefore well-positioned to act within these spheres in ways that draw upon the ethical principles that guide patient care and contribute materially to the cause of equity for colleagues and patients alike. By making changes to the ways they already work within their clinical spaces, institutional leadership roles, and wider communities, physicians can counteract the structural problems that undermine the health of the patients they serve.


Asunto(s)
COVID-19 , Médicos , Humanos , Liderazgo , Pandemias , SARS-CoV-2
13.
J Gen Intern Med ; 35(7): 1971-1978, 2020 07.
Artículo en Inglés | MEDLINE | ID: mdl-32399911

RESUMEN

BACKGROUND: Physicians play a key role in mitigating and managing costs in healthcare which are rising. OBJECTIVE: Conduct a cross-sectional survey in 2017, comparing results to a 2012 survey to understand US physicians' evolving attitudes and strategies concerning healthcare costs. PARTICIPANTS: Random sample of 1200 US physicians from the AMA Masterfile. MEASURES: Physician views on responsibility for costs of care, enthusiasm for cost-saving strategies, cost-consciousness scale, and practice strategies on addressing cost. KEY RESULTS: Among 1200 physicians surveyed in 2017, 489 responded (41%). In 2017, slightly more physicians reported that physicians have a major responsibility for addressing healthcare costs (32% vs. 27%, p = 0.03). In 2017, more physicians attributed "major responsibility" for addressing healthcare costs to pharmaceutical companies (68% vs. 56%, p < 0.001) and hospital and health systems (63% vs. 56%%, p = 0.008) in contrast to 2012. Fewer respondents in 2017 attributed major responsibility for addressing costs to trial lawyers (53% vs. 59%, p = 0.007) and patients (42% vs. 52%, p < 0.0001) as compared to 2012. Physician enthusiasm for patient-focused cost-containment strategies like high deductible health plans and higher co-pays (62% vs. 42%, p < 0.0001 and 62% vs. 39%, p < 0.0001, not enthusiastic, respectively) declined. Physicians reported that when they discussed cost, it resulted in a change in disease management 56% of the time. Cost-consciousness within surveyed physicians had not changed meaningfully in 2017 since 2012 (31.7 vs. 31.2). Most physicians continued to agree that decision support tools showing costs would be helpful in their practice (> 70%). After adjusting for specialty, political affiliation, practice setting, age, and gender, only democratic/independent affiliation remained a significant predictor of cost-consciousness. CONCLUSIONS AND RELEVANCE: US physicians increasingly attribute responsibility for rising healthcare costs to organizations and express less enthusiasm for strategies that increase patient out-of-pocket cost. Interventions that focus on physician knowledge and communication strategies regarding cost of care may be helpful.


Asunto(s)
Médicos , Actitud del Personal de Salud , Comunicación , Control de Costos , Estudios Transversales , Humanos , Encuestas y Cuestionarios
14.
Health Expect ; 23(1): 148-158, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-31646728

RESUMEN

BACKGROUND: Despite increasing attention to patient and family advisory councils (PFACs), what patients who are not PFAC members expect of PFACs remains understudied. Understanding their expectations is critical if PFACs are to help health systems achieve certain outcomes (eg increased patient satisfaction with health systems). OBJECTIVE: To obtain rich insights about what patients who are not PFAC members expect of PFACs. DESIGN: From July to September 2018, we conducted a qualitative study using focus groups. SETTING AND PARTICIPANTS: We recruited patients and caregivers who receive their care from the Johns Hopkins Medicine Alliance for Patients (JMAP), LLC, a Medicare accountable care organization that in 2014 established a PFAC, the Beneficiary Advisory Council. APPROACH: Using grounded theory, we analysed field notes, analytic memos and transcripts to develop a theoretical model of patient engagement via PFACs. RESULTS: Forty-two patients and caregivers participated in five focus groups that included individuals of different ages, races, health statuses and socio-economic statuses. Participants were largely unaware of PFACs. Participants wanted to know who represented them (interpreted as a form of political representation) and emphasized the need for representatives' diversity. Who mattered because who could affect what PFACs do. Participants expected that all patients should be able to communicate with PFACs and that meaningful engagement could enhance perceptions of health systems. CONCLUSIONS: Eliciting views about patient representation from patients who have not been engaged as advisors or representatives has the potential to inform PFACs' activities. Attention should be given to improving and measuring patients' awareness of, and interactions with, their patient representatives.


Asunto(s)
Comités Consultivos , Familia , Defensa del Paciente , Participación del Paciente , Satisfacción del Paciente , Anciano , Anciano de 80 o más Años , Cuidadores , Femenino , Grupos Focales , Teoría Fundamentada , Humanos , Masculino , Medicare , Persona de Mediana Edad , Investigación Cualitativa , Estados Unidos
15.
Ann Intern Med ; 177(5): 690-691, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38768489
16.
Global Health ; 15(1): 60, 2019 11 01.
Artículo en Inglés | MEDLINE | ID: mdl-31675976

RESUMEN

BACKGROUND: Globalization has made it possible for global health professionals and trainees to participate in short-term training and professional experiences in a variety of clinical- and non-clinical activities across borders. Consequently, greater numbers of healthcare professionals and trainees from high-income countries (HICs) are working or volunteering abroad and participating in short-term experiences in low- and middle-income countries (LMICs). How effective these activities are in advancing global health and in addressing the crisis of human resources for health remains controversial. What is known, however, is that during these short-term experiences in global health (STEGH), health professionals and those in training often face substantive ethical challenges. A common dilemma described is that of acting outside of one's scope of training. However, the frequency, nature, circumstances, and consequences of performing outside scope of training (POST) have not been well-explored or quantified. METHODS: The authors conducted an online survey of HIC health professionals and trainees working or volunteering in LMICs about their experiences with POST, within the last 5 years. RESULTS: A total of 223 survey responses were included in the final analysis. Half (49%) of respondents reported having been asked to perform outside their scope of training; of these, 61% reported POST. Trainees were nearly twice as likely as licensed professionals to report POST. Common reasons cited for POST were a mismatch of skills with host expectations, suboptimal supervision at host sites, inadequate preparation to decline POST, a perceived lack of alternative options and emergency situations. Many of the respondents who reported POST expressed moral distress that persisted over time. CONCLUSIONS: Given that POST is ethically problematic and legally impermissible, the high rates of being asked, and deciding to do so, were notable. Based on these findings, the authors suggest that additional efforts are needed to reduce the incidence of POST during STEGH, including pre-departure training to navigate dilemmas concerning POST, clear communication regarding expectations, and greater attention to the moral distress experienced by those contending with POST.


Asunto(s)
Educación Médica/estadística & datos numéricos , Salud Global/educación , Personal de Salud/psicología , Pautas de la Práctica en Medicina/estadística & datos numéricos , Alcance de la Práctica , Países en Desarrollo , Personal de Salud/estadística & datos numéricos , Humanos , Misiones Médicas , Principios Morales , Pautas de la Práctica en Medicina/ética , Distrés Psicológico , Alcance de la Práctica/ética , Encuestas y Cuestionarios
17.
Am J Bioeth ; 24(6): 50-53, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38829588
18.
Ann Intern Med ; 168(9): 651-657, 2018 05 01.
Artículo en Inglés | MEDLINE | ID: mdl-29582076

RESUMEN

This American College of Physicians position paper aims to inform ethical decision making surrounding participation in short-term global health clinical care experiences. Although the positions are primarily intended for practicing physicians, they may apply to other health care professionals and should inform how institutions, organizations, and others structure short-term global health experiences. The primary goal of short-term global health clinical care experiences is to improve the health and well-being of the individuals and communities where they occur. In addition, potential benefits for participants in global health include increased awareness of global health issues, new medical knowledge, enhanced physical diagnosis skills when practicing in low-technology settings, improved language skills, enhanced cultural sensitivity, a greater capacity for clinical problem solving, and an improved sense of self-satisfaction or professional satisfaction. However, these activities involve several ethical challenges. Addressing these challenges is critical to protecting patient welfare in all geographic locales, promoting fair and equitable care globally, and maintaining trust in the profession. This paper describes 5 core positions that focus on ethics and the clinical care context and provides case scenarios to illustrate them.


Asunto(s)
Toma de Decisiones Clínicas/ética , Atención a la Salud/ética , Salud Global/ética , Competencia Clínica , Asistencia Sanitaria Culturalmente Competente/ética , Ética Médica , Humanos , Relaciones Interprofesionales , Satisfacción en el Trabajo , Profesionalismo
19.
20.
J Healthc Manag ; 64(5): 332-346, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31498210

RESUMEN

EXECUTIVE SUMMARY: Health systems increasingly engage with patient representatives on their governance boards or with patient and family advisory councils to improve care delivery. Little is known about how general patients regard those engagement activities. The objective of this study was to assess the importance of patient representation. We mailed a survey to 31,687 Medicare beneficiaries attributed to a Medicare accountable care organization. We examined relationships between respondents' views and their health characteristics and performed thematic analysis on free-text responses. Among 3,061 respondents, the majority believed that having a patient representative (74.1%) or a patient council (74.0%) mattered "some" or "a lot." The main factors respondents considered in answering were that "patients deserve a voice" (64%) and "having a patient on the [governance] board increases my trust" in this organization (46%). Our analysis of free-text responses illuminated why patient representatives are important, keys to successful engagement, and reasons behind the skepticism. This study indicates that most patients believe representation in health system governance is important, and that realizing its potential requires engagement activities that improve general patients' awareness of, and interaction with, their representatives.


Asunto(s)
Consejo Directivo , Defensa del Paciente , Participación del Paciente , Conocimientos, Actitudes y Práctica en Salud , Humanos , Satisfacción del Paciente , Calidad de la Atención de Salud/estadística & datos numéricos , Encuestas y Cuestionarios , Estados Unidos
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