'It's Powerful' The impact of involving children and young people in developing paediatric research agendas: A qualitative interview study.

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.

The Use of Evidence to Design an Essential Package of Health Services in Pakistan: A Review and Analysis of Prioritisation Decisions at Different Stages of the Appraisal Process.

BACKGROUND: Pakistan embarked on a process of designing an essential package of health services (EPHS) as a pathway towards universal health coverage (UHC). The EPHS design followed an evidence-informed deliberative process; evidence on 170 interventions was introduced along multiple stages of appraisal engaging different stakeholders tasked with prioritising interventions for inclusion. We report on the composition of the package at different stages, analyse trends of prioritised and deprioritised interventions and reflect on the trade-offs made. METHODS: Quantitative evidence on cost-effectiveness, budget impact, and avoidable burden of disease was presented to stakeholders in stages. We recorded which interventions were prioritised and deprioritised at each stage and carried out three analyses: (1) a review of total number of interventions prioritised at each stage, along with associated costs per capita and disability-adjusted life years (DALYs) averted, to understand changes in affordability and efficiency in the package, (2) an analysis of interventions broken down by decision criteria and intervention characteristics to analyse prioritisation trends across different stages, and (3) a description of the trajectory of interventions broken down by current coverage and cost-effectiveness. RESULTS: Value for money generally increased throughout the process, although not uniformly. Stakeholders largely prioritised interventions with low budget impact and those preventing a high burden of disease. Highly cost-effective interventions were also prioritised, but less consistently throughout the stages of the process. Interventions with high current coverage were overwhelmingly prioritised for inclusion. CONCLUSION: Evidence-informed deliberative processes can produce actionable and affordable health benefit packages. While cost-effective interventions are generally preferred, other factors play a role and limit efficiency.

"It's hard to say anything definitive about what severity really is": lay conceptualisations of severity in a healthcare context.

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.

Using a priority setting exercise to identify priorities for guidelines on newborn and child health in South Africa, Malawi, and Nigeria.

BACKGROUND: Sub-Saharan Africa is the region with the highest under-five mortality rate globally. Child healthcare decisions should be based on rigorously developed evidence-informed guidelines. The Global Evidence, Local Adaptation (GELA) project is enhancing capacity to use global research to develop locally relevant guidelines for newborn and child health in South Africa (SA), Malawi, and Nigeria. The first step in this process was to identify national priorities for newborn and child health guideline development, and this paper describes our approach. METHODS: We followed a good practice method for priority setting, including stakeholder engagement, online priority setting surveys and consensus meetings, conducted separately in South Africa, Malawi and Nigeria. We established national Steering Groups (SG), comprising 10-13 members representing government, academia, and other stakeholders, identified through existing contacts and references, who helped prioritise initial topics identified by research teams and oversaw the process. Various stakeholders were consulted via online surveys to rate the importance of topics, with results informing consensus meetings with SGs where final priority topics were agreed. RESULTS: Based on survey results, nine, 10 and 11 topics were identified in SA, Malawi, and Nigeria respectively, which informed consensus meetings. Through voting and discussion within meetings, and further engagement after the meetings, the top three priority topics were identified in each country. In SA, the topics concerned anemia prevention in infants and young children and post-discharge support for caregivers of preterm and LBW babies. In Malawi, they focused on enteral nutrition in critically ill children, diagnosis of childhood cancers in the community, and caring for neonates. In Nigeria, the topics focused on identifying pre-eclampsia in the community, hand hygiene compliance to prevent infections, and enteral nutrition for LBW and preterm infants. CONCLUSIONS: Through dynamic and iterative stakeholder engagement, we identified three priority topics for guideline development on newborn and child health in SA, Malawi and Nigeria. Topics were specific to contexts, with no overlap, which highlights the importance of contextualised priority setting as well as of the relationships with key decisionmakers who help define the priorities.

Accounting for future populations in health research.

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.

An empirical ethics study of the coherence of NICE technology appraisal policy and its implications for moral justification.

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.

Preparing popular views for inclusion in a reflective equilibrium: A case study on illness severity.

Principles for priority setting in health care are typically forged by experts influenced by the normative literature on priority setting. Meanwhile, their implementation is subject to democratic deliberation, political pressures, and administrative bureaucracy. Sometimes expert proposals are democratically rejected. This points towards a problem: on the one hand, the fact that a majority shares a moral belief does not inherently validate this belief. On the other hand, when justifying a position to others, we cannot expect much success without engaging with their moral judgments. In this work we examine the possibility of including so-called popular views in a reflective equilibrium process. In reflective equilibrium processes, we are usually interested in considered judgments rather than mere intuitions. Popular views, arguably, often do not meet this standard. To mitigate this, we propose to bolster popular views by linking them with theoretical frameworks echoing similar moral perspectives. We use illness severity as a case study and show that a set of popular accounts can provide considered judgments that merit inclusion in a publicly informed reflective equilibrium process. This is plausibly a way forward in the search for priority setting principles that are both normatively sound and acceptable to the public. Our method provides a general framework for refining available data on popular views on moral questions, including when we cannot assess the consideredness of such views.

How stable are moral judgements? A longitudinal study of context dependency in attitudes towards patient responsibility.

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.

Autistic Adults' Priorities for Future Autism Employment Research: Perspectives from the United Kingdom.

Background: A growing body of research has sought to understand autistic people's research priorities. Several of these studies have identified employment as a key research priority. Yet, there have been a few attempts to identify specific, actionable priorities within this area. Methods: Using an online survey, we asked 197 autistic people in the United Kingdom about their priorities for future autism-employment research. Results: Participants spoke of their challenges in gaining and sustaining meaningful employment and called for researchers to conduct research that results in direct improvements to employment experiences. Regarding their research priorities, participants indicated a need for research covering all aspects of the employment lifecycle from accessing employment to transitioning out of employment. Importantly, participants also discussed how such research should be conducted: with autistic people as co-researchers and ensuring a diverse range of autistic people are listened to. Conclusion: While much existing autism-employment research appears to align with the priorities outlined in this study, seemingly minimal attention has been paid to later stages of the work lifecycle (e.g., progressing into more senior job roles or transitioning out of work). By identifying disparities between autistic people's priorities and the research being conducted, we can support autistic people to drive the research agenda and ensure autism-employment research positively impacts the community it aims to serve.

Why was this study done?: It is important for autism research to identify and study topics that are important to autistic people. Employment has been highlighted as an important topic by autistic people in many studies. However, we don't know what specific topics employment research should look at. What was the purpose of this study?: We wanted to know which employment-related topics autistic people think are important to research and understand why. What did the researchers do?: We created an online survey to ask autistic people about what employment research should look at. The survey asked participants about themselves (e.g., their age) and their employment experience (e.g., if they were employed or not). We also asked questions about what employment topics should be researched, why these topics are important, and what changes employment research should lead to. In total, 197 autistic people responded. We read through all the responses and grouped similar responses together. What were the results of the study?: Lots of our participants found it hard to find and keep a job. They wanted research to make autistic peoples' experiences of employment better. For example, by making hiring processes better, and by making workplaces more inclusive. They also said that research should look at all parts of employment from getting a job, to leaving a job and retiring. Participants also talked about how research should be done. They said more autistic people should be included as researchers, and we should include different autistic people from different backgrounds. What do these findings add to what was already known?: Our findings show that lots of autism-employment research is on topics that autistic people think are important. However, not much research has looked at later stages of employment, such as getting a promotion or retiring. What are potential weaknesses in the study?: Most of our participants were White, female, employed and had a degree, but in the wider autistic population that isn't the case. People from other backgrounds may have different experiences of employment, and therefore want different research. We also don't know which topic is the most important because we didn't ask participants to rank the topics they spoke about. How will these findings help autistic adults now or in the future?: This study highlights key topics that autism-employment researchers should look at. By showing where the gaps in research are, we can make sure that all the employment topics autistic people think are important are researched.

Research priorities in regional anaesthesia: an international Delphi study.

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.

Charting public views on the meaning of illness severity.

BACKGROUND: Illness severity is a central principle in multiple priority-setting frameworks, yet there is a paucity of research on public views regarding the meaning of illness severity. This study builds on the findings of a Q methodology study with members of the public that identified four general viewpoints on the meaning of illness severity. Here, we investigate the support for those viewpoints among the Norwegian population. METHODS: Following piloting, the online survey was distributed to a broadly representative sample of the population (March to April 2023). The viewpoints from the earlier Q study were converted into vignettes: Lifespan, Subjective, Objective, and Functioning and Quality of Life (FQoL). The main task in the survey comprised ranking the vignettes and scoring them on a 0-10 visual analogue scale. We describe vignette alignment (from weak to strong) based on four categorisations (C1 to C4). C1 placed all respondents on their top scored vignette(s); C2 required a score of ≥7; C3 was designed to resolve ties; and C4 (which describes vignette membership) required a score of ≥7, a gap of two between vignettes scored ≥7, and did not allow ties. RESULTS: The survey was completed by 1174 individuals; those who completed in ≤3.5 min were excluded. Of the final sample (n = 1094), 98.1% scored at least one vignette ≥7. In C1, 40.2% were aligned with Lifespan, 32.4% with FQoL, 28.9% with Objective, and 16.3% with Subjective. Using the C4 criteria, 55.4% did not have vignette membership, 13.6% had membership with Lifespan, 13.1% with Objective, 11.4% with FQoL, and 6.5% with Subjective. CONCLUSIONS: Severity is an ambiguous term among members of the public. Decisionmakers ought to bear this plurality of meanings in mind, and perhaps reconsider whether using a term as multifaceted as 'severity' is helpful in formulating precise and transparent priority-setting criteria.

National Immunization Program Decision Making Using the CAPACITI Decision-Support Tool: User Feedback from Indonesia and Ethiopia.

To ensure that limited domestic resources are invested in the most effective interventions, immunization programs in low- and middle-income countries (LMICs) must prioritize a growing number of new vaccines while considering opportunities to optimize the vaccine portfolio, as well as other components of the health system. There is a strong impetus for immunization decision-making to engage and coordinate various stakeholders across the health system in prioritization. To address this, national immunization program decision-makers in LMICs collaborated with WHO to structure deliberation among stakeholders and document an evidence-based, context-specific, and transparent process for prioritization or selection among multiple vaccination products, services, or strategies. The output of this effort is the Country-led Assessment for Prioritization on Immunization (CAPACITI) decision-support tool, which supports using multiple criteria and stakeholder perspectives to evaluate trade-offs affecting health interventions, taking into account variable data quality. Here, we describe the user feedback from Indonesia and Ethiopia, two initial countries that piloted the CAPACITI decision-support tool, highlighting enabling and constraining factors. Potential immunization program benefits and lessons learned are also summarized for consideration in other settings.

Topic identification, selection, and prioritization for health technology assessment in selected countries: a mixed study design.

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.

Priority setting in times of crises: an analysis of priority setting for the COVID-19 response in the Western Pacific Region.

BACKGROUND: While priority setting is recognized as critical for promoting accountability and transparency in health system planning, its role in supporting rational, equitable and fair pandemic planning and responses is less well understood. This study aims to describe how priority setting was used to support planning in the initial stage of the pandemic response in a subset of countries in the Western Pacific Region (WPR). METHODS: We purposively sampled a subset of countries from WPR and undertook a critical document review of the initial national COVID-19 pandemic response plans. A pre-specified tool guided data extraction and the analysis examined the use of quality parameters of priority setting, and equity considerations. RESULTS: Nine plans were included in this analysis, from the following countries: Papua New Guinea, Tonga, The Philippines, Fiji, China, Australia, New Zealand, Japan, and Taiwan. Most commonly the plans described strong political will to respond swiftly, resource needs, stakeholder engagement, and defined the roles of institutions that guided COVID-19 response decision-making. The initial plans did not reflect strong evidence of public engagement or considerations of equity informing the early responses to the pandemic. CONCLUSION: This study advances an understanding of how priority setting and equity considerations were integrated to support the development of the initial COVID-19 responses in nine countries in WPR and contributes to the literature on health system planning during emergencies. This baseline assessment reveals evidence of the common priority setting parameters that were deployed in the initial responses, the prioritized resources and equity considerations and reinforces the importance of strengthening health system capacity for priority setting to support future pandemic preparedness.

Stakeholder participation in the COVID-19 pandemic preparedness and response plans: A synthesis of findings from 70 countries.

Stakeholder participation is a key component of a fair and equitable priority-setting in health. The COVID-19 pandemic highlighted the need for fair and equitable priority setting, and hence, stakeholder participation. To date, there is limited literature on stakeholder participation in the development of the pandemic plans (including the priority setting plans) that were rapidly developed during the pandemic. Drawing on a global study of national COVID-19 preparedness and response plans, we present a secondary analysis of COVID-19 national plans from 70 countries from the six WHO regions, focusing on stakeholder participation. We found that most plans were prepared by the Ministry of Health and acknowledged WHO guidance, however less than half mentioned that additional stakeholders were involved. Few plans described a strategy for stakeholder participation and/or accounted for public participation in the plan preparation. However, diverse stakeholders (including multiple governmental, non-governmental, and international organizations) were proposed to participate in the implementation of the plans. Overall, there was a lack of transparency about who participated in decision-making and limited evidence of meaningful participation of the community, including marginalized groups. The critical relevance of stakeholder participation in priority setting requires that governments develop strategies for meaningful participation of diverse stakeholders during pandemics such as COVID-19, and in routine healthcare priority setting.

Severity and death.

This article discusses the relationship between two theories about the badness of death, the Life-Comparative Account and the Gradualist Account, and two methods of operationalizing severity in health care priority setting, Absolute Shortfall and Proportional Shortfall. The aim is that theories about the badness of death can influence and inform the idea of the basis of severity as a priority setting criterion. I argue that there are strong similarities between the Life-Comparative Account and Absolute Shortfall, and since the Life-Comparative Account is one of the most reasonable accounts of the badness of death, this provides some support for using Absolute Shortfall. I also argue that it is difficult to find support for Proportional Shortfall from theories about the badness of death, and also, that it is difficult to find support for Gradualist Account from theories about severity.

A global comparative analysis of the the inclusion of priority setting in national COVID-19 pandemic plans: A reflection on the methods and the accessibility of the plans.

BACKGROUND: Despite the swift governments' response to the COVID-19 pandemic, there remains a paucity of literature assessing the degree to which; priority setting (PS) was included in the pandemic plans and the pandemic plans were publicly accessible. This paper reflects on the methods employed in a global comparative analysis of the degree to which countries integrated PS into their COVID-19 pandemic plans based on Kapiriri & Martin's framework. We also assessed if the accessibility of the plans was related to the country's transparency index. METHODS: Through a three stage search strategy, we accessed and reviewed 86 national COVID-19 pandemic plans (and 11 Canadian provinces and territories). Secondary analysis assessed any alignment between the readily accessible plans and the country's transparency index. RESULTS AND CONCLUSION: 71 national plans were readily accessible while 43 were not. There were no systematic differences between the countries whose plans were readily available and those whose plans were 'missing'. However, most of the countries with 'missing' plans tended to have a low transparency index. The framework was adapted to the pandemic context by adding a parameter on the need to plan for continuity of priority routine services. While document review may be the most feasible and appropriate approach to conducting policy analysis during health emergencies, interviews and follow up document review would assess policy implementation.

How did European countries set health priorities in response to the COVID-19 threat? A comparative document analysis of 24 pandemic preparedness plans across the EURO region.

The COVID-19 pandemic has forced governments across the world to consider how to prioritise the allocation of scarce resources. There are many tools and frameworks that have been designed to assist with the challenges of priority setting in health care. The purpose of this study was to examine the extent to which formal priority setting was evident in the pandemic plans produced by countries in the World Health Organisation's EURO region, during the first wave of the COVID-19 pandemic. This compliments analysis of similar plans produced in other regions of the world. Twenty four pandemic preparedness plans were obtained that had been published between March and September 2020. For data extraction, we applied a framework for identifying and assessing the elements of good priority setting to each plan, before conducting comparative analysis across the sample. Our findings suggest that while some pre-requisites for effective priority setting were present in many cases - including political commitment and a recognition of the need for allocation decisions - many other hallmarks were less evident, such as explicit ethical criteria, decision making frameworks, and engagement processes. This study provides a unique insight into the role of priority setting in the European response to the onset of the COVID-19 pandemic.

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project.

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.

Ethical dilemmas in prioritizing patients for scarce radiotherapy resources.

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.