Research priorities for progressive pulmonary fibrosis in the UK.

INTRODUCTION: Health research bodies recommend patient involvement and engagement in research and healthcare planning, although their implementation is not yet widespread. This deficiency extends to progressive pulmonary fibrosis (PPF), where crucial aspects remain unknown, including causal mechanisms, curative treatments and optimal symptom management. This study addresses these gaps by seeking stakeholders' perspectives to guide research and treatment directions. METHOD: A priority-setting partnership was established to explore stakeholders' priorities in the diagnosis, treatment, management and care of PPF, including idiopathic pulmonary fibrosis which is the archetypal PPF. Stakeholders included people living with PPF, their carers, relatives and healthcare professionals involved in their management. RESULTS: Through an online open-ended survey, 2542 responses were collected from 638 stakeholders. Thematic analysis identified 48 specific research questions, which were then cross-referenced with academic literature to pinpoint research gaps. Following the evidence check, 44 unanswered questions were shortlisted by 834 stakeholders in a second online survey. Ultimately, a top 10 priority list was established through consensus.The prioritised research questions include (1) improved diagnosis accuracy and timing, (2) development of new treatments, (3) enhanced accuracy in primary care, (4) optimal timing for drug and non-drug interventions, (5) effective cough treatment, (6) early intervention for PPF, (7) improved survival rates, (8) symptom reduction, (9) impact of interventions on life expectancy and (10) new treatments with reduced side effects. CONCLUSION: Stakeholders' priorities can be summarised into five areas: early diagnosis, drug and non-drug treatments, survival and symptom management. Ideally, these topics should guide funding bodies and health policies.

[Priority setting in intensive care from an ethical perspective]. / Prioriteringar i intensivvården ur ett etiskt perspektiv.

Priority setting at intensive care units is legally regulated in accordance with the so-called ethical platform, which states that all priorities must be based on three lexically ranked principles: the principle of human dignity (a ban on discrimination, e.g. based on social standing), the principle of needs and solidarity, and the principle of cost-effectiveness. Prioritization for intensive care is particularly difficult as it requires comparisons between widely different patient categories, occurs in acute situations and is fraught with great uncertainty about the prognosis. Sometimes the degree of severity is maximal for several patients: without treatment, they die. Then treatment effect and cost-effectiveness become more decisive for prioritization decisions. Moreover, withholding and withdrawing intensive care are increasingly considered as morally equivalent. Difficult priority decisions risk moral stress among the intensive care staff.

[Intensive care and priority setting during catastrophe or war]. / Intensivvård och prioriteringar i fredstida katastrofer och krig.

In this article we discuss some ethically and legally controversial issues in the Swedish priority guidelines for intensive care during the recent covid pandemic. We show how the Swedish ethics platform for priority setting constitutes a robust starting point for such guidance, but that there is a lack of detail leaving some of the more challenging situations without explicit guidance. To provide guidance, which we have reason to do in order to avoid inequality and arbitrariness, we should try to interpret the ethics platform, based on how it is applied in practice together with ethical reasoning. In this article, we illustrate this by focusing on contested guidance concerning biological age when distributing scarce intensive care beds. We conclude that biological age should be interpreted in terms of long-term survival. We also conclude that the ethical platform does not provide guidance in these challenging situations, but needs interpretation. Therefore, there is a need of a legal overview of the principles in order to create an even stronger basis for support in the future.

Publishing priorities in global health: A framework and empirical analysis.

Though vital to health policymaking processes, little is known about the distribution of attention to issues global health journals focus on or their alignment with commitments to health equity. We developed a new framework and methods to help address these analytical gaps. We used content analysis to systematically identify and novel methods to measure attention to themes, subthemes and geographies represented in more than 2,000 research articles published in two of the longest-running multidisciplinary global health journals, Bulletin of the World Health Organization and Health Policy and Planning, between 2004 and 2018. We found four major themes-health systems and conditions received the most attention, followed by population groups and policy dynamics. Finer grained analysis shows that the broad-based journals feature many common themes and some, including subthemes like communicable diseases, financing and children, are heavily favoured over others, such as workforce and noncommunicable diseases. It reveals publishing gaps for some highly marginalised groups and shows attention to health equity fluctuates. The new framework and methods can be used to (1) check the distribution of publishing attention for consistency with global health and specific journal aims and (2) support inquiry into priority setting dynamics in the broader research publishing arena.

Identification and Prioritization of Health Indexes in Nomadic Tribespeople by Fuzzy Delphi Method: An Ecological Study.

The migratory lifestyle of nomadic communities, combined with the lack of a suitable health-related organizational structure, has made it difficult to provide health care services that can improve their health status. To achieve the concept of justice in health and sustainable development, it is imperative to improve the health status of all citizens in Iran, which consists of the nomadic communities, and urban and rural populations. In this ecological study national health indexes in nomadic tribespeople was Identified and prioritized by expert panel and fuzzy Delphi method. In the first step, the national health indexes were extracted from the literature, and then indexes that can be measured, evaluated and representative of the nomadic communities were extracted and prioritized by using fuzzy Delphi and TOPSIS methods, Questionnaire options were analyzed according to 3 criteria of economic efficiency, measurability, and simplicity in the form of 13 components and their indicators. The analysis of the results of the fuzzy Delphi method shows that the mental health component has the lowest real score in the criteria of measurability, simplicity and economic efficiency. The child care component has the highest real score in terms of economic efficiency and the vaccination component has the highest real score based on the criteria of measurability and simplicity in nomadic communities. The results of the TOPSIS method show that the components of vaccination, maternal care and child care have the highest priority for attention and investigation of their indicators in this segment of the population. In general, by designing and implementing systems to record the information of priority indexes extracted from the present study, it is possible for responsible organizations to make effective decisions and plans for the improvement of the health status of nomadic communities.

COVID-19 research response to immediate demands: setting priorities with key stakeholders to enable health services research in NSW, Australia.

PURPOSE: COVID-19 has caused unprecedented disruption to health systems. There is much to be gained by capturing what was learned from changes and adaptations made by health services and systems. The Ministry of Health in New South Wales (NSW), Australia, sought to prioritise health services research (HSR) to address critical issues arising from the COVID-19 pandemic. We tested a priority setting methodology to create priorities for a specific funding opportunity and to extract generalisable lessons. DESIGN/METHODOLOGY/APPROACH: A virtual roundtable meeting of key stakeholders was held in June 2020. We used a modified Nominal Group Technique (NGT) for priority setting, with potential items (n = 35) grouped under headings. Data was analysed through a reflective deliberative process. FINDINGS: We engaged 89 senior policy makers, health service executives, clinicians and researchers in the roundtable. The NGT proved an efficient method with participants reaching consensus on eight priorities. Findings included strong support for learning from the rapid response to COVID-19 and addressing needs of vulnerable populations and the health workforce. Opinions differed about strategic areas investment and where learnings should be via internal evaluation rather than funded research. Three of the eight recommended priorities were included in the funding opportunity. RESEARCH LIMITATIONS/IMPLICATIONS: Coronavirus disease 2019 (COVID-19) required unprecedented change and adaptations within health systems, and rapid, applied health services research can help to create, understand and (where relevant) sustain change beyond the immediate impact of the pandemic. While final decisions may be dependent on a wider range of considerations by government, stakeholder enthusiasm for engagement in priority setting exercises may be dampened if they do not perceive their application in decision-making. PRACTICAL IMPLICATIONS: A modified nominal group technique can be used to set research priorities in constrained conditions by engaging large numbers of stakeholders in rankings and then using an online delivery of a roundtable and to reach consensus on priorities in real time. Recommended priorities for health services research can be readily generated through rapid engagement but does not guarantee their application. SOCIAL IMPLICATIONS: Australia's swift response to COVID-19 pandemic in 2020 was perceived as a relative success due to the rapid public health and policy response and a relatively low number of cases. This response was underpinned by systematic knowledge mobilisation including support for targeted and prioritised health services research to fill knowledge gaps. ORIGINALITY/VALUE: Setting priority processes can provide rich, engaged input to support government funding decisions about HSR. A wide range of dynamic and iterative processes influence decision-making in a rapidly evolving situation in the health system response to COVID-19. It is crucial to consider how major investment decisions will support a value-based healthcare system.

Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in the Netherlands following the James Lind Alliance priority setting partnership approach.

OBJECTIVE: Experiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals. METHODS: This study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24). RESULTS: Phase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES. CONCLUSION: The top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.

Evaluation of Rhode Island's Early Geographic COVID-19 Vaccine Prioritization Policy.

Objectives. To determine whether geographic prioritization of limited COVID-19 vaccine supply was effective for reducing geographic disparities in case rates. Methods. Rhode Island allocated a portion of the initial COVID-19 vaccine supply to residents of Central Falls, a community already affected by structural policies and inadequate systems that perpetuate health inequities and experiencing disproportionately high COVID-19 morbidity and mortality. The policy was implemented with a culturally and linguistically appropriate community engagement plan and was intended to reduce observed disparities. Using a Bayesian causal analysis with population surveillance data, we evaluated the impact of this prioritization policy on recorded cases over the subsequent 16 weeks. Results. Early geographic prioritization of Central Falls accelerated vaccine uptake, averting an estimated 520 cases (95% confidence interval = 22, 1418) over 16 weeks and reducing cases by approximately 34% during this period (520 averted vs 1519 expected without early prioritization). Conclusions. Early geographic prioritization increased vaccine uptake and reduced cases in Central Falls, thereby reducing geographic disparities. Public Health Implications. Public health institutions should consider geographic prioritization of limited vaccine supply to reduce geographic disparities in case rates. (Am J Public Health. 2024;114(S7):S580-S589. https://doi.org/10.2105/AJPH.2024.307741).

Addressing the UHC Challenge Using the Disease Control Priorities 3 Approach: Lessons Learned and an Overview of the Pakistan Experience.

BACKGROUND: Pakistan developed its first national Essential Package of Health Services (EPHS) as a key step towards accelerating progress in achieving Universal Health Coverage (UHC). We describe the rationale, aims, the systematic approach followed to EPHS development, methods adopted, outcomes of the process, challenges encountered, and lessons learned. METHODS: EPHS design was led by the Ministry of National Health Services, Regulations & Coordination. The methods adopted were technically guided by the Disease Control Priorities 3 Country Translation project and existing country experience. It followed a participatory and evidence-informed prioritisation and decision-making processes. RESULTS: The full EPHS covers 117 interventions delivered at the community, health centre and first-level hospital platforms at a per capita cost of US$29.7. The EPHS also includes an additional set of 12 population-based interventions at US$0.78 per capita. An immediate implementation package (IIP) of 88 district-level interventions costing US$12.98 per capita will be implemented initially together with the population-based interventions until government health allocations increase to the level required to implement the full EPHS. Interventions delivered at the tertiary care platform were also prioritised and costed at US$6.5 per capita, but they were not included in the district-level package. The national EPHS guided the development of provincial packages using the same evidence-informed process. The government and development partners are in the process of initiating a phased approach to implement the IIP. CONCLUSION: Key ingredients for a successful EPHS design requires a focus on package feasibility and affordability, national ownership and leadership, and solid engagement of national stakeholders and development partners. Major challenges to the transition to implementation are to continue strengthening the national technical capacity, institutionalise priority setting and package design and its revision in ministries of health, address health system gaps and bridge the current gap in financing with the progressive increase in coverage towards 2030.

Identifying health and healthcare priorities in rural areas: A concept mapping study informed by consumers, health professionals and researchers.

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.

The Use of Evidence-Informed Deliberative Processes for Designing the Essential Package of Health Services in Pakistan.

BACKGROUND: The Disease Control Priorities 3 (DCP3) project provides long-term support to Pakistan in the development and implementation of its universal health coverage essential package of health services (UHC-EPHS). This paper reports on the priority setting process used in the design of the EPHS during the period 2019-2020, employing the framework of evidence-informed deliberative processes (EDPs), a tool for priority setting with the explicit aim of optimising the legitimacy of decision-making in the development of health benefit packages. METHODS: We planned the six steps of the framework during two workshops in the Netherlands with participants from all DCP3 Pakistan partners (October 2019 and February 2020), who implemented these at the country level in Pakistan in 2019 and 2020. Following implementation, we conducted a semi-structured online survey to collect the views of participants in the UHC benefit package design about the prioritisation process. RESULTS: The key steps in the EDP framework were the installation of advisory committees (involving more than 150 members in several Technical Working Groups [TWGs] and a National Advisory Committee [NAC]), definition of decision criteria (effectiveness, cost-effectiveness, avoidable burden of disease, equity, financial risk protection, budget impact, socio-economic impact and feasibility), selection of interventions for evaluation (a total of 170), and assessment and appraisal (across the three dimensions of the UHC cube) of these interventions. Survey respondents were generally positive across several aspects of the priority setting process. CONCLUSION: Despite several challenges, including a partial disruption because of the COVID-19 pandemic, implementation of the priority setting process may have improved the legitimacy of decision-making by involving stakeholders through participation with deliberation, and being evidence-informed and transparent. Important lessons were learned that can be beneficial for other countries designing their own health benefit package such as on the options and limitations of broad stakeholder involvement.