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1.
Proc Natl Acad Sci U S A ; 119(2)2022 01 11.
Artículo en Inglés | MEDLINE | ID: mdl-34983877

RESUMEN

Natural disasters impose huge uncertainty and loss to human lives and economic activities. Landslides are one disaster that has become more prevalent because of anthropogenic disturbances, such as land-cover changes, land degradation, and expansion of infrastructure. These are further exacerbated by more extreme precipitation due to climate change, which is predicted to trigger more landslides and threaten sustainable development in vulnerable regions. Although biodiversity conservation and development are often regarded as having a trade-off relationship, here we present a global analysis of the area with co-benefits, where conservation through expanding protection and reducing deforestation can not only benefit biodiversity but also reduce landslide risks to human society. High overlap exists between landslide susceptibility and areas of endemism for mammals, birds, and amphibians, which are mostly concentrated in mountain regions. We identified 247 mountain ranges as areas with high vulnerability, having both exceptional biodiversity and landslide risks, accounting for 25.8% of the global mountainous areas. Another 31 biodiverse mountains are classified as future vulnerable mountains as they face increasing landslide risks because of predicted climate change and deforestation. None of these 278 mountains reach the Aichi Target 11 of 17% coverage by protected areas. Of the 278 mountains, 52 need immediate actions because of high vulnerability, severe threats from future deforestation and precipitation extremes, low protection, and high-population density and anthropogenic activities. These actions include protected area expansion, forest conservation, and restoration where it could be a cost-effective way to reduce the risks of landslides.


Asunto(s)
Biodiversidad , Cambio Climático , Conservación de los Recursos Naturales , Deslizamientos de Tierra , Animales , Aves , Desastres , Ecosistema , Monitoreo del Ambiente , Bosques , Humanos , Mamíferos , Densidad de Población , Medición de Riesgo
2.
Artículo en Inglés | MEDLINE | ID: mdl-38914917

RESUMEN

PURPOSE: To use robust consensus methods with individuals with lived breast cancer experience to agree the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery in the UK. METHODS: Research uncertainties related to information and support for breast cancer surgery submitted by patients and carers were analysed thematically to generate summary questions for inclusion in an online Delphi survey. Individuals with lived breast cancer experience completed two Delphi rounds including feedback in which they selected their top 10 research priorities from the list provided. The most highly ranked priorities from the survey were discussed at an in-person prioritisation workshop at which the final top 10 was agreed. RESULTS: The 543 uncertainties submitted by 156 patients/carers were categorised into 63 summary questions for inclusion in the Delphi survey. Of the 237 individuals completing Round 1, 190 (80.2%) participated in Round 2. The top 25 survey questions were carried forward for discussion at the in-person prioritisation workshop at which 17 participants from across the UK agreed the final top 10 research priorities. Key themes included ensuring patients were fully informed about all treatment options and given balanced, tailored information to support informed decision-making and empower their recovery. Equity of access to treatments including contralateral mastectomy for symmetry was also considered a research priority. CONCLUSION: This process has identified the top 10 research priorities to improve information and support for patients undergoing breast cancer surgery. Work is now needed to develop studies to address these important questions.

3.
BMC Cancer ; 24(1): 962, 2024 Aug 06.
Artículo en Inglés | MEDLINE | ID: mdl-39107697

RESUMEN

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.


Asunto(s)
Cuidadores , Defensa del Paciente , Sarcoma , Humanos , Sarcoma/terapia , Femenino , Masculino , Cuidadores/psicología , Persona de Mediana Edad , Adulto , Encuestas y Cuestionarios , Investigación Biomédica , Anciano , Participación del Paciente , Adulto Joven
4.
Int J Equity Health ; 23(1): 1, 2024 Jan 02.
Artículo en Inglés | MEDLINE | ID: mdl-38167082

RESUMEN

BACKGROUND: Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. METHODS: The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2 years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. RESULTS: Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. CONCLUSIONS: The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play.


Asunto(s)
Albinismo , Política de Salud , Humanos , Derechos Humanos , Organizaciones , Determinantes Sociales de la Salud
5.
Cost Eff Resour Alloc ; 22(1): 12, 2024 Feb 06.
Artículo en Inglés | MEDLINE | ID: mdl-38321468

RESUMEN

BACKGROUND: There is limited evidence-informed guidance on TISP processes for countries where health technology assessment (HTA) is in a nascent phase. We aimed to explore the range of topic identification, selection and prioritization (TISP) processes and practices for HTA in selected countries and identify aspects relevant to emerging HTA systems. METHODS: This mixed design study included a systematic literature review, an electronic survey, and individual interviews. We conducted a systematic literature review with criteria that were developed a priori to identify countries deemed to have a recently formalized HTA system. Based on the literature review, a twenty-three item online survey was shared with the identified countries, we completed follow-up interviews with ten participants who have experience with HTA. We analyzed documents, survey responses and interview transcripts thematically to identify lessons related to TISP processes and practices. RESULTS: The literature review identified 29 nine candidate countries as having a "potential" recently formalized HTA system. Twenty-one survey responses were analyzed and supplemented with ten individual interviews. We found variation in countries' approaches to TISP - particularly between pharmaceutical and non-pharmaceutical interventions. Results indicate that TISP is heavily driven by policy makers, expert involvement, and to a lesser extent, relevant stakeholders. The use of horizon-scanning and early warning systems is uncommon. Interviewee participants provided further insight to the survey data, reporting that political awareness and an institutional framework were important to support TISP. TISP can be optimized by stronger national regulations and legislative structures, in addition to education and advocacy about HTA among politicians and decision-makers. In some settings regional networks have been useful, particularly in the development of TISP guidelines and methodologies. Additionally, the technical capacity to conduct TISP, and access to relevant local data were factors limiting TISP in national settings. Increased network collaboration and capacity building were reported as future needs. CONCLUSIONS: This study provides current insights into a topic where there is limited published peer reviewed literature. TISP is an important first step of HTA, and topics should be selected and prioritized based on local need and relevance. The limited capacity for TISP in settings where HTA is emerging may be supported by local and international collaboration to increase capacity and knowledge. To succeed, both TISP and HTA need to be embedded within national health care priority setting and decision-making. More in-depth understanding of where countries are situtated in formalizing the TISP process may help others to overcome factors that facilitate or hinder progress.

6.
Br J Anaesth ; 132(5): 1041-1048, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38448274

RESUMEN

BACKGROUND: Regional anaesthesia use is growing worldwide, and there is an increasing emphasis on research in regional anaesthesia to improve patient outcomes. However, priorities for future study remain unclear. We therefore conducted an international research prioritisation exercise, setting the agenda for future investigators and funding bodies. METHODS: We invited members of specialist regional anaesthesia societies from six continents to propose research questions that they felt were unanswered. These were consolidated into representative indicative questions, and a literature review was undertaken to determine if any indicative questions were already answered by published work. Unanswered indicative questions entered a three-round modified Delphi process, whereby 29 experts in regional anaesthesia (representing all participating specialist societies) rated each indicative question for inclusion on a final high priority shortlist. If ≥75% of participants rated an indicative question as 'definitely' include in any round, it was accepted. Indicative questions rated as 'definitely' or 'probably' by <50% of participants in any round were excluded. Retained indicative questions were further ranked based on the rating score in the final Delphi round. The final research priorities were ratified by the Delphi expert group. RESULTS: There were 1318 responses from 516 people in the initial survey, from which 71 indicative questions were formed, of which 68 entered the modified Delphi process. Eleven 'highest priority' research questions were short listed, covering themes of pain management; training and assessment; clinical practice and efficacy; technology and equipment. CONCLUSIONS: We prioritised unanswered research questions in regional anaesthesia. These will inform a coordinated global research strategy for regional anaesthesia and direct investigators to address high-priority areas.


Asunto(s)
Anestesia de Conducción , Investigación Biomédica , Humanos , Técnica Delphi , Encuestas y Cuestionarios , Proyectos de Investigación
7.
Health Expect ; 27(4): e14136, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38990165

RESUMEN

OBJECTIVES: The purpose of this study was to engage key stakeholders in a health research priority-setting process to identify, prioritize and produce a community-driven list of research questions addressing intersectional issues on mental health and addictions (MHA) in acquired brain injury (ABI). METHODS: A multiphasic health research priority-setting process was co-designed and executed with community-based stakeholders, including researchers, health professionals, clinicians, service providers, representatives from brain injury associations, policy makers and people with lived experience of ABI and MHA, including patients and their family members. Stakeholders' ideas led to the generation of research questions, which were prioritized at a 1-day workshop. RESULTS: Fifty-nine stakeholders participated in the priority-setting activity during the workshop, which resulted in a rank-ordered list of the top 10 questions for research addressing the intersections of ABI and MHA. Questions identified touched on several pressing issues (e.g., opioid crisis, homelessness), encompassed multiple subtypes of ABI (e.g., hypoxic-ischaemic, mild traumatic), and involved different domains (e.g., identification, intervention) of health research. CONCLUSIONS: This community-driven health research priority-setting study identified and prioritized research questions addressing the intersections of ABI and MHA. Researchers and funding agencies should use this list to inform their agendas and address stakeholders' most urgent needs, fostering meaningful improvements to clinical services. PATIENT OR PUBLIC CONTRIBUTION: An 11-person working group comprised of people with lived experience, service providers, researchers, healthcare professionals and other key stakeholders collaboratively developed and informed the scope, design, methodology and interpretation of this study. Over 50 community-based stakeholders contributed to the research priority-setting activity. One co-author is a person with lived experience.


Asunto(s)
Lesiones Encefálicas , Participación de los Interesados , Humanos , Lesiones Encefálicas/terapia , Trastornos Relacionados con Sustancias/terapia , Salud Mental , Prioridades en Salud
8.
Health Expect ; 27(3): e14096, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38895996

RESUMEN

INTRODUCTION: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste. AIM: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care. METHODS: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes. RESULTS: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts. CONCLUSION: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online. PATIENT OR PUBLIC CONTRIBUTION: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings.


Asunto(s)
Prioridades en Salud , Humanos , Reino Unido , Investigación sobre Servicios de Salud , Toma de Decisiones Conjunta , Investigación
9.
Health Expect ; 27(2): e14028, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38613790

RESUMEN

INTRODUCTION: There is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post-PPI) activities were planned. METHODS: We conducted a qualitative study using in-depth interviews to identify and gain an in-depth understanding of the impact of involving CYP in developing PRAs. The transcripts were uploaded to Atlas.ti to be coded and organised. Dutch-language interviews were analysed and interpreted together with vocational education and training (VET) students. These students were aged between 14 and 18 years and were training to become nurses. RESULTS: Three CYP and 15 researchers decided to participate. We focused on three categories of impact: agenda-setting impact, individual impact and academic impact. Involving CYP creates a more enriched and clarified agenda. It ensured that both CYP and researchers underwent personal or professional growth and development, it created a connection between the people involved, awareness about the importance of involving CYP and it ensured that the people involved had a positive experience. The participants were unable to indicate the academic impact of their PRAs, but they did understand the key factors for creating it. In addition, the need to measure impact was highlighted, with a particular focus on assessing individual impact. DISCUSSION: Our study outlines the diverse subthemes of impact that arise from involving CYP in developing PRAs. Despite the potential of research agendas to amplify CYP voices, only a minority of researchers strategized post-PPI activities ensuring impactful outcomes, prompting the need for thorough evaluation of various impact forms and consistent alignment with the overarching goal of transforming the research field. PATIENT OR PUBLIC CONTRIBUTION: We involved VET students in the data analysis and interpretation phase by forming a young person advisory group. The data analysis of the interviews analysed by the VET students revealed four distinct themes: 1. Learnt new knowledge. 2. Learnt to collaborate. 3. Learnt to listen. 4. Assessment of the individual impact.


Asunto(s)
Investigadores , Estudiantes , Niño , Humanos , Adolescente , Escolaridad , Aprendizaje , Investigación Cualitativa
10.
Bioethics ; 38(5): 401-409, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38602177

RESUMEN

The research we fund today will improve the health of people who will live tomorrow. But future people will not all benefit equally: decisions we make about what research to prioritize will predictably affect when and how much different people benefit from research. Organizations that fund health research should thus fairly account for the health needs of future populations when setting priorities. To this end, some research funders aim to allocate research resources in accordance with disease burden, prioritizing illnesses that cause more morbidity and mortality. In this article, I defend research funders' practice of aligning research funding with disease burden but argue that funders should aim to align research funding with future-rather than present-disease burden. I suggest that research funders should allocate research funding in proportion to aggregated estimates of disease burden over the period when research could plausibly start to yield benefits until indefinitely into the future.


Asunto(s)
Investigación Biomédica , Humanos , Investigación Biomédica/ética , Apoyo a la Investigación como Asunto , Prioridades en Salud/ética , Costo de Enfermedad , Predicción , Asignación de Recursos/ética
11.
BMC Health Serv Res ; 24(1): 530, 2024 Apr 26.
Artículo en Inglés | MEDLINE | ID: mdl-38671489

RESUMEN

BACKGROUND: Long-term care services for older adults are characterised by increasing needs and scarce resources. Political strategies have led to the reorganisation of long-term care services, with an increased focus on "ageing in place" and efficient use of resources. There is currently limited research on the processes by which resource allocation decisions are made by service allocators of long-term care services for older adults. The aim of this study is to explore how three political principles for priority setting in long-term care, resource, severity and benefit, are expressed in service allocation to older adults. METHODS: This qualitative study uses data from semi-structured individual interviews, focus groups and observations of service allocators who assess needs and assign long-term care services to older adults in Norway. The data were supplemented with individual decision letters from the allocation office, granting or denying long-term care services. The data were analysed using reflexive thematic analysis. RESULTS: The allocators drew on all three principles for priority setting when assessing older adults' long-term care needs and allocating services. We found that the three principles pushed in different directions in the allocation process. We identified six themes related to service allocators' expression of the principles: (1) lowest effective level of care as a criterion for service allocation (resource), (2) blanket allocation of low-cost care services (resource), (3) severity of medical and rehabilitation needs (severity), (4) severity of care needs (severity), (5) benefit of generous service allocation (benefit) and (6) benefit of avoiding services (benefit). CONCLUSIONS: The expressions of the three political principles for priority setting in long-term care allocation are in accordance with broader political trends and discourses regarding "ageing in place", active ageing, an investment ideology, and prioritising those who are "worse off". Increasing attention to the rehabilitation potential of older adults and expectations that they will take care of themselves increase the risk of not meeting frail older adults' care needs. Additionally, difficulties in defining the severity of older adults' complex needs lead to debates regarding "worse off" versus potentiality in future long-term care services allocation. TRIAL REGISTRATION: Not applicable.


Asunto(s)
Grupos Focales , Asignación de Recursos para la Atención de Salud , Prioridades en Salud , Cuidados a Largo Plazo , Evaluación de Necesidades , Investigación Cualitativa , Humanos , Anciano , Noruega , Femenino , Masculino , Entrevistas como Asunto , Anciano de 80 o más Años , Asignación de Recursos
12.
BMC Health Serv Res ; 24(1): 490, 2024 Apr 19.
Artículo en Inglés | MEDLINE | ID: mdl-38641590

RESUMEN

BACKGROUND: Demand for healthcare outweighs available resources, making priority setting a critical issue. 'Severity' is a priority-setting criterion in many healthcare systems, including in Norway, Sweden, the Netherlands, and the United Kingdom. However, there is a lack of consensus on what severity means in a healthcare context, both in the academic literature and in policy. Further, while public preference elicitation studies demonstrate support for severity as a relevant concern in priority setting, there is a paucity of research on what severity is taken to mean for the public. The purpose of this study is to explore how severity is conceptualised by members of the general public. METHODS: Semi-structured group interviews were conducted from February to July 2021 with members of the Norwegian adult public (n = 59). These were transcribed verbatim and subjected to thematic analysis, incorporating inductive and deductive elements. RESULTS: Through the analysis we arrived at three interrelated main themes. Severity as subjective experience included perceptions of severity as inherently subjective and personal. Emphasis was on the individual's unique insight into their illness, and there was a concern that the assessment of severity should be fair for the individual. The second theme, Severity as objective fact, included perceptions of severity as something determined by objective criteria, so that a severe condition is equally severe for any person. Here, there was a concern for determining severity fairly within and across patient groups. The third theme, Severity as situation dependent, included perceptions of severity centered on second-order effects of illness. These included effects on the individual, such as their ability to work and enjoy their hobbies, effects on those surrounding the patient, such as next of kin, and effects at a societal level, such as production loss. We also identified a concern for determining severity fairly at a societal level. CONCLUSIONS: Our findings suggest that severity is a polyvalent notion with different meanings attached to it. There seems to be a dissonance between lay conceptualisations of severity and policy operationalisations of the term, which may lead to miscommunications between members of the public and policymakers.


Asunto(s)
Formación de Concepto , Atención a la Salud , Adulto , Humanos , Instituciones de Salud , Noruega , Países Bajos
13.
Int J Technol Assess Health Care ; 40(1): e27, 2024 Apr 29.
Artículo en Inglés | MEDLINE | ID: mdl-38679461

RESUMEN

OBJECTIVES: Systematic priority setting is necessary for achieving high-quality healthcare using limited resources in low- and middle-income countries. Health technology assessment (HTA) is a tool that can be used for systematic priority setting. The objective of this study was to conduct a stakeholder and situational analysis of HTA in Zimbabwe. METHODS: We identified and analyzed stakeholders using the International Decision Support Initiative checklist. The identified stakeholders were invited to an HTA workshop convened at the University of Zimbabwe. We used an existing HTA situational analysis questionnaire to ask for participants' views on the need, demand, and supply of HTA. A follow-up survey was done among representatives of stakeholder organizations that failed to attend the workshop. We reviewed two health policy documents relevant to the HTA. Qualitative data from the survey and document review were analyzed using thematic analysis. RESULTS: Forty-eight organizations were identified as stakeholders for HTA in Zimbabwe. A total of 41 respondents from these stakeholder organizations participated in the survey. Respondents highlighted that the HTA was needed for transparent decision making. The demand for HTA-related evidence was high except for the health economic and ethics dimensions, perhaps reflecting a lack of awareness. Ministry of Health was listed as a major supplier of HTA data. CONCLUSIONS: There is no formal HTA agency in the Zimbabwe healthcare system. Various institutions make decisions on prioritization, procurement, and coverage of health services. The activities undertaken by these organizations provide context for the institutionalization of HTA in Zimbabwe.


Asunto(s)
Participación de los Interesados , Evaluación de la Tecnología Biomédica , Zimbabwe , Evaluación de la Tecnología Biomédica/organización & administración , Humanos , Toma de Decisiones , Prioridades en Salud , Política de Salud
14.
BMC Med Ethics ; 25(1): 28, 2024 Mar 06.
Artículo en Inglés | MEDLINE | ID: mdl-38448909

RESUMEN

BACKGROUND: As the UK's main healthcare priority-setter, the National Institute for Health and Care Excellence (NICE) has good reason to want to demonstrate that its decisions are morally justified. In doing so, it has tended to rely on the moral plausibility of its principle of cost-effectiveness and the assertion that it has adopted a fair procedure. But neither approach provides wholly satisfactory grounds for morally defending NICE's decisions. In this study we adopt a complementary approach, based on the proposition that a priority-setter's claim to moral justification can be assessed, in part, based on the coherence of its approach and that the reliability of any such claim is undermined by the presence of dissonance within its moral system. This study is the first to empirically assess the coherence of NICE's formal approach and in doing so to generate evidence-based conclusions about the extent to which this approach is morally justified. METHODS: The study is grounded in the theory, methods and standards of empirical bioethics. Twenty NICE policy documents were coded to identify and classify the normative commitments contained within NICE technology appraisal policy as of 31 December 2021. Coherence was systematically assessed by attempting to bring these commitments into narrow reflective equilibrium (NRE) and by identifying sources of dissonance. FINDINGS: Much of NICE policy rests on coherent values that provide a strong foundation for morally justified decision-making. However, NICE's formal approach also contains several instances of dissonance which undermine coherence and prevent NRE from being fully established. Dissonance arises primarily from four sources: i) NICE's specification of the principle of cost-effectiveness; ii) its approach to prioritising the needs of particular groups; iii) its conception of reasonableness in the context of uncertainty, and iv) its concern for innovation as an independent value. CONCLUSION: At the time of analysis, the level of coherence across NICE policy provides reason to question the extent to which its formal approach to technology appraisal is morally justified. Some thoughts are offered on why, given these findings, NICE has been able to maintain its legitimacy as a healthcare priority-setter and on what could be done to enhance coherence.


Asunto(s)
Bioética , Principios Morales , Humanos , Reproducibilidad de los Resultados , Tecnología , Políticas
15.
BMC Med Ethics ; 25(1): 36, 2024 Mar 25.
Artículo en Inglés | MEDLINE | ID: mdl-38528534

RESUMEN

BACKGROUND: Whether patients' life-style should involve lower priority for treatment is a controversial question in bioethics. Less is known about clinicians' views. AIM: To study how clinical doctors' attitudes to questions of patient responsibility and priority vary over time. METHOD: Surveys of doctors in Norway in 2008, 2014, 2021. Questionnaires included statements about patients' lifestyle's significance for priority to care, and vignettes of priority cases (only in 2014). RESULTS: Attitudes were fairly stable between 2008 and 2021. 17%/14% agreed that patients' lifestyle should count, while 19%/22% agreed that it should involve lower priority to scarce organs. 42/44% agreed that smokers should have lower priority. Substantially more agreed in 2014. Regression analyses showed that being male, working in hospital, and younger age increased the likelihood of agreeing. CONCLUSION: A substantial minority of doctors agreed that lifestyle should be a priority criterion, possibly contrary to Norwegian legislation and professional ethics. The finding might be explained by the unspecified meaning of priority, increased scarcity-awareness, or socio-cultural trends towards individualism. The 2014 results indicate a framing effect; the vignettes may have primed the respondents towards accepting lifestyle as a criterion. We conclude that attitudes to normative questions are unstable and depend on context. A substantial minority of doctors seems to be positive to deprioritizing patients allegedly responsible for their illness. However, what deprioritization implies in practice is not clear.


Asunto(s)
Juicio , Médicos , Humanos , Masculino , Femenino , Estudios Longitudinales , Actitud del Personal de Salud , Principios Morales , Encuestas y Cuestionarios
16.
BMC Palliat Care ; 23(1): 194, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39090640

RESUMEN

BACKGROUND: A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs. METHOD: Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics. RESULTS: A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage. CONCLUSION: The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.


Asunto(s)
Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/tendencias , Colombia , Investigación/tendencias , Prioridades en Salud/tendencias
17.
BMC Med Ethics ; 25(1): 12, 2024 01 31.
Artículo en Inglés | MEDLINE | ID: mdl-38297294

RESUMEN

BACKGROUND: Radiotherapy is an essential component of cancer treatment, yet many countries do not have adequate capacity to serve all patients who would benefit from it. Allocation systems are needed to guide patient prioritization for radiotherapy in resource-limited contexts. These systems should be informed by allocation principles deemed relevant to stakeholders. This study explores the ethical dilemmas and views of decision-makers engaged in real-world prioritization of scarce radiotherapy resources at a cancer center in Rwanda in order to identify relevant principles. METHODS: Semi-structured interviews were conducted with a purposive sample of 22 oncology clinicians, program leaders, and clinical advisors. Interviews explored the factors considered by decision-makers when prioritizing patients for radiotherapy. The framework method of thematic analysis was used to characterize these factors. Bioethical analysis was then applied to determine their underlying normative principles. RESULTS: Participants considered both clinical and non-clinical factors relevant to patient prioritization for radiotherapy. They widely agreed that disease curability should be the primary overarching driver of prioritization, with the goal of saving the most lives. However, they described tension between curability and competing factors including age, palliative benefit, and waiting time. They were divided about the role that non-clinical factors such as social value should play, and agreed that poverty should not be a barrier. CONCLUSIONS: Multiple competing principles create tension with the agreed upon overarching goal of maximizing lives saved, including another utilitarian approach of maximizing life-years saved as well as non-utilitarian principles, such as egalitarianism, prioritarianism, and deontology. Clinical guidelines for patient prioritization for radiotherapy can combine multiple principles into a single allocation system to a significant extent. However, conflicting views about the role that social factors should play, and the dynamic nature of resource availability, highlight the need for ongoing work to evaluate and refine priority setting systems based on stakeholder views.

18.
Health Res Policy Syst ; 22(1): 64, 2024 May 30.
Artículo en Inglés | MEDLINE | ID: mdl-38816760

RESUMEN

INTRODUCTION: Collaboration is gaining prominence in the priority setting of Health Policy And System Research (HPSR). However, its practice and challenges are not well explored in Ethiopia. Understanding the practice and barriers of collaborative Health Policy and System Research will help design approaches and platforms for setting inclusive and participatory policy and system-level health research topics. This paper explores the practice and barriers of collaborative HPSR-priority setting exercise in Ethiopia. METHODS: This study investigates the practice and barriers of collaborative health policy and system research priority-setting exercises in Ethiopia. Utilizing a mixed-methods approach, we conducted Key Informant Interviews (KIIs) and an online self-administered survey with open-ended questionnaires to capture diverse perspectives from stakeholders involved in the research priority-setting process. Through conventional content analysis, we identified key contents related to current practices, challenges, and opportunities for enhancing collaboration in health policy and system research prioritization. RESULTS: Our findings reveal a complex landscape characterized by varying levels of stakeholder engagement, institutional capacity constraints, and competing priorities within the health research ecosystem. Despite notable efforts to foster collaboration, stakeholders identified persistent challenges such as limited resources, institutional fragmentation, and inadequate coordination mechanisms as barriers to effective priority-setting processes. The implications of our research extend beyond academic discourse, with direct relevance to health policy and system research practice in Ethiopia. By shedding light on the dynamics of collaborative priority-setting exercises, our findings offer valuable insights for policymakers, researchers, and practitioners seeking to enhance the effectiveness and inclusivity of health research prioritization processes. Addressing the identified barriers and leveraging existing strengths in the research ecosystem can contribute to more evidence-informed health policies and programs, ultimately improving health outcomes for Ethiopian populations. CONCLUSIONS: Most institutions do not apply health policy and system research-priority setting to conduct informed decision-making. The barriers explored were weak integration, lack of knowledge, system, and platforms for the priority setting of Health Policy and System Resreach. So, it is recommended to build skills of different actors in the Health Policy and System Research-priority setting exercise and design a system and platform to integrate different stakeholders for collaborative research topics priority setting.


Asunto(s)
Conducta Cooperativa , Política de Salud , Prioridades en Salud , Participación de los Interesados , Etiopía , Humanos , Formulación de Políticas , Investigación sobre Servicios de Salud , Encuestas y Cuestionarios
19.
Health Res Policy Syst ; 22(1): 105, 2024 Aug 13.
Artículo en Inglés | MEDLINE | ID: mdl-39135114

RESUMEN

BACKGROUND: It is vital that health service delivery and health interventions address patients' needs or preferences, are relevant for practice and can be implemented. Involving those who will use or deliver healthcare in priority-setting can lead to health service delivery and research that is more meaningful and impactful. This is particularly crucial in rural communities, where limited resources and disparities in healthcare and health outcomes are often more pronounced. The aim of this study was to determine the health and healthcare priorities in rural communities using a region-wide community engagement approach. METHODS: This multi-methods study was conducted in five rural communities in the Grampians region, Western Victoria, Australia. It involved six concept mapping steps: (1) preparation, (2) generation (brainstorming statements and identifying rating criteria), (3) structuring statements (sorting and rating statements), (4) representation of statements, (5) interpretation of the concept map and (6) utilization. Community forums, surveys and stakeholder consultations with community members and health professionals were used in Step 2. An innovative online group concept mapping platform, involving consumers, health professionals and researchers was used in Step 3. RESULTS: Overall, 117 community members and 70 health professionals identified 400 health and healthcare issues. Six stakeholder consultation sessions (with 16 community members and 16 health professionals) identified three key values for prioritizing health issues: equal access for equal need, effectiveness and impact (number of people affected). Actionable priorities for healthcare delivery were largely related to access issues, such as the challenges navigating the healthcare system, particularly for people with mental health issues; the lack of sufficient general practitioners and other health providers; the high travel costs; and poor internet coverage often impacting technology-based interventions for people in rural areas. CONCLUSIONS: This study identified actionable health and healthcare priorities from the perspective of healthcare service users and providers in rural communities in Western Victoria. Issues related to access, such as the inequities in healthcare costs, the perceived lack of quality and availability of services, particularly in mental health and disability, were identified as priorities. These insights can guide future research, policy-making and resource allocation efforts to improve healthcare access, quality and equity in rural communities.


Asunto(s)
Personal de Salud , Prioridades en Salud , Población Rural , Humanos , Victoria , Femenino , Masculino , Servicios de Salud Rural/organización & administración , Atención a la Salud , Participación de la Comunidad , Adulto , Investigadores , Persona de Mediana Edad , Participación de los Interesados , Accesibilidad a los Servicios de Salud , Anciano , Investigación sobre Servicios de Salud
20.
Health Res Policy Syst ; 22(1): 107, 2024 Aug 14.
Artículo en Inglés | MEDLINE | ID: mdl-39143597

RESUMEN

INTRODUCTION: Health policy and systems research (HPSR) is a multi-disciplinary approach of generating health system and policy-level evidence. Setting HPSR agendas is considered as an efficient strategy to map and identify policy and cost-effective research topics, but its practice in developing countries is limited. This paper aimed to conduct a collaborative health policy and system research priority-setting exercise in Ethiopia. METHOD: The WHO's plan, implement, publish, and evaluate (PIPE) framework and the Delphi technique were used to conduct the priority-setting exercise. The PIPE model was used to lead the priority-setting process from planning to evaluation, while the Delphi technique was used to run the rating and ranking exercise with the aim of reaching a consensus. Two rounds of expert panel workshops supplemented with an online survey were used for the HPSR agenda setting, rating and ranking purposes. Groups were formed using the WHO health system building blocks as a base framework to identify and prioritize the HPSR topics. RESULT: Under 8 themes, 32 sub-themes and 182 HPSR topics were identified. The identified research themes include leadership management and governance, health policy, health information system, healthcare financing, human resource for health, medical products and supply, service delivery and cross-cutting issues. CONCLUSIONS: Priority HPSR topics focussing on national health priority issues were identified. The identified topics were shared with policymakers and academic and research institutions. Evidence generation on the identified priority topics will guide future research endeavours and improve evidence-informed decision-making practice, health system performance and national health goals and targets.


Asunto(s)
Atención a la Salud , Técnica Delphi , Política de Salud , Prioridades en Salud , Etiopía , Humanos , Conducta Cooperativa , Investigación sobre Servicios de Salud , Formulación de Políticas , Liderazgo , Consenso , Países en Desarrollo
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