Health Research Priority Setting Research Articles

Exploring Health Research Priority Setting in a South African Province: A Nominal Group Technique Approach.

In August 2022, the Free State Provincial Health Research Committee used the online nominal group technique (NGT) for Health Research Priority Setting (HRPS) for the Free State Department of Health (FSDoH) and the research community, considering various stakeholders' perspectives. This paper explores and describes the identified health research priorities. It also assesses their alignment with the National Health Research Strategy. Additionally, it provides an opinion on the feasibility of using the online NGT for collaborative co-creation of provincial-level health research priorities. Most of the identified health research priorities resonate with the national health research priorities identified by the National Health Research Committee. However, research to "strengthen surveillance" was uniquely perceived to be a priority by the participants in the Free State HRPS exercise. A plausible reason for this might be their heightened awareness of the vital role optimal surveillance systems play in coordinating intersectoral responses to pandemics, particularly considering the serious challenges emerging during the initial stages of the COVID-19 outbreak.

Experience is central and connections matter: A Leximancer analysis of the research priorities of people with lived experience of mental health issues in Australia

Mental health research priority-setting has a long history internationally. Many of these studies use expert panels or consensus methods across multiple mental health stakeholder groups. Whilst such approaches are designed to produce agreed research priorities, there is a risk that the specific and nuanced priorities of less powerful groups, especially those with lived experience of mental health issues, are lost in translation. We aimed to develop Australian mental health research priorities from the perspectives of people living with mental ill-health and their carers, families and kinship group members. A cross-sectional, open-ended survey was conducted nationally in Australia during January and February 2022. We asked participants to list three priorities on which mental health research should focus. Responses were analysed using Leximancer, a text analytics tool, to examine the concepts and their connections across the data. A total of 365 people with lived experience of mental ill-health participated in the survey. The majority (57%) identified as consumers, with 14% identifying as carers and 29% reporting both types of lived experience. Participants were from all Australian states and territories and from metropolitan, regional and remote areas. The Leximancer analysis generated 30 concepts in six thematic priority areas. The most prominent themes were experience, treatment and impact, followed by stigma, peer and trauma. The concept maps displayed complex connections and interrelationships between specific concepts, with lived experience a large and central concept. Analysis of the textual responses emphasised the importance of examining specifics, as the nuanced research priorities traversed themes and concept across the maps. This project provides robust evidence on the central importance of experience as driving mental health lived experience research priorities. Further, it demonstrates that people with lived experience describe the key issues in complex, interrelated ways that require multi-factorial research approaches to address.

Partnering with consumers and practising clinicians to establish research priorities for public hospital maternity services.

Objective An innovative approach by two Queensland health services was taken to establish a shared maternity services' research agenda by partnering with consumers and clinicians. The objective was to set the top five research priorities to ensure that the future direction of maternity research was relevant to end-user and organisational needs. Methods A modified James Lind Alliance (JLA) methodology was applied between August 2022 and February 2023 across two south-east Queensland Health Services which included five participating maternity units and involved partnership with consumers, healthcare professionals and clinician researchers. The reporting guideline for priority setting of health research (REPRISE) was followed. Results There were 192 respondents to the initial harvesting survey, generating 461 research suggestions. These were aggregated into 122 unique questions and further summarised into a list of 44 research questions. The 157 eligible interim prioritisation survey respondents short-listed 27 questions ready for ranking at a final consensus workshop. The top five question themes were: (1) maternity care experience, engagement and outcomes of priority populations; (2) increasing spontaneous vaginal birth; (3) experiences and perceptions of woman/person-centred care; (4) best practice care during the 'fourth' trimester; and (5) antibiotic use during labour and birth. Conclusion Applying an adapted JLA framework can successfully shape and establish a research agenda within Australian health services, through partnership with consumers and practicing clinicians. This is a transparent process that strengthens the legitimacy and credibility of research agendas, and it can form a replicable framework for other settings.

Building consensus on priority areas for Sub-Saharan Africa's ageing population research: An e-Delphi study protocol.

Improvement in medico-social services has increased life expectancy and population ageing in Sub-Saharan Africa (SSA). It was estimated that about 163 million people aged 65 and older will be resident in SSA by 2050. There is inadequate ageing research capacity in SSA which necessitates this study to (a) identify a decade-long ageing research opportunities, challenges, and solutions, and (b) prioritize critical ageing research areas and methodologies relevant to the SSA. We designed an e-Delphi protocol following the Reporting Guideline for Priority Setting of Health Research with Stakeholder. The stakeholders will be researchers, practitioners, older adults, and caregivers purposively selected through snowballing quota sampling to complete three rounds of e-Delphi surveys. Round 1 will involve open-ended questions derived from the study objectives. Responses from round 1 will be prepared as a checklist for stakeholders to rate during rounds 2 & 3, using a 9-point scale: low priority (1-3), moderate priority (4-6), and high priority (7-9). The criterion for reaching a consensus will be ≥ 70% of stakeholders rating an item "high priority" and ≤ 15% as "low priority." Quantitative data will be analysed using descriptive statistics, Wilcoxon matched-pairs signed-rank test will be used to assess the stability of stakeholders' responses, and qualitative comments will be analysed using content analysis. Setting aging research/practice priorities will help maximize the benefits of research investment and provide valuable direction for allocating public and private research funds to areas of strategic importance.

Ethics and health research priority setting: a narrative review.

This narrative review aims to describe current practice and ongoing discussions in the academic literature regarding ethics and health research priority setting. It begins with some preliminary distinctions regarding types of research priority setting. It then gives some background on current practice with respect to formal research priority setting exercises, including summaries of The Ad Hoc Committee on Health Research method, the Child Health and Nutrition Research Initiative (CHNRI) method, the Combined Approach Matrix (CAM), the Delphi method, the Essential National Health Research (ENHR) strategy for priority setting, and the James Lind Alliance (JLA) framework. The majority of the paper reports the results of a literature review covering specifically ethical issues under the thematic headings of process criteria, substantive criteria, global justice, the obligations of specific actors, and research topics. It closes with some summary thoughts about apparent gaps and directions for future investigation.

Reflections from an insider researcher ‘doing’ feminist participatory action research to co-produce a research agenda with British Pakistani women; a seldom heard group

Participation of community stakeholders in health research priority setting is an emerging trend. Despite this, the involvement of marginalised groups in research prioritisation is limited and where they are involved, sample sizes are small, where individuals are merely consulted with, rather than coproducing the research agenda. Without addressing power dynamics inherent in research prioritisation with marginalised groups, their engagement in the research process can be tokenistic and the resulting research agenda unreflective of their needs. This article, therefore, aims to generate knowledge on how feminist participatory action research was used to co-produce an obesity research agenda with British Pakistani women, a seldom heard population, living in deprived areas. The methodology enabled Pakistani women to be involved in all stages of the project, culminating in the co-production of an obesity research agenda that accurately reflects their unmet needs. Women’s engagement in the project led to their increased confidence, the formation of relationships that lasted beyond the research project, improvements to their lifestyles, and engagement in further research. Feminist participatory action research may be used by researchers as a guiding methodology due to its ability to improve women’s lives and develop research agendas for women’s health.

Global research priorities related to the World Health Organization Labour Care Guide: results of a global consultation

BackgroundThe World Health Organization (WHO) published the WHO Labour Care Guide (LCG) in 2020 to support the implementation of its 2018 recommendations on intrapartum care. The WHO LCG promotes evidence-based labour monitoring and stimulates shared decision-making between maternity care providers and labouring women. There is a need to identify critical questions that will contribute to defining the research agenda relating to implementation of the WHO LCG.MethodsThis mixed-methods prioritization exercise, adapted from the Child Health and Nutrition Research Initiative (CHNRI) and James Lind Alliance (JLA) methods, combined a metrics-based design with a qualitative, consensus-building consultation in three phases. The exercise followed the reporting guideline for priority setting of health research (REPRISE). First, 30 stakeholders were invited to submit online ideas or questions (generation of research ideas). Then, 220 stakeholders were invited to score "research avenues" (i.e., broad research ideas that could be answered through a set of research questions) against six independent and equally weighted criteria (scoring of research avenues). Finally, a technical working group (TWG) of 20 purposively selected stakeholders reviewed the scoring, and refined and ranked the research avenues (consensus-building meeting).ResultsInitially, 24 stakeholders submitted 89 research ideas or questions. A list of 10 consolidated research avenues was scored by 75/220 stakeholders. During the virtual consensus-building meeting, research avenues were refined, and the top three priorities agreed upon were: (1) optimize implementation strategies of WHO LCG, (2) improve understanding of the effect of WHO LCG on maternal and perinatal outcomes, and the process and experience of labour and childbirth care, and (3) assess the effect of the WHO LCG in special situations or settings. Research avenues related to the organization of care and resource utilization ranked lowest during both the scoring and consensus-building process.ConclusionThis systematic and transparent process should encourage researchers, program implementers, and funders to support research aligned with the identified priorities related to WHO LCG. An international collaborative platform is recommended to implement prioritized research by using harmonized research tools, establishing a repository of research priorities studies, and scaling-up successful research results.

Mental health service accessibility, development and research priority setting in Cambodia - a post-conflict nation

BackgroundThe limited health and social care infrastructure that existed in the 1970s in Cambodia was destroyed due to the Khmer Rouge. Mental Health service infrastructures have developed in Cambodia in the last twenty five years, however, they have been shaped significantly by very limited funding being made available for human resources, support services and research. The lack of research on Cambodia’s mental health systems and services is a significant barrier to the development of evidence-based mental health policies and practice. In order to address this barrier, effective research and development strategies are needed in Cambodia, which are based on locally well-informed research priorities. There are many possibilities for mental health research in LMIC countries such as Cambodia, therefore focused research priorities in these areas are needed to guide future research investment. This paper is the result of the development of international collaborative workshops, which focused on service mapping and research priority setting in the field of mental health in Cambodia. MethodsA nominal group technique was used to gather ideas and insights from a range of key mental health service stakeholders in Cambodia. Results: The key issues in service provisions for people with mental health issues and disorders, the interventions and programmes of support available, and currently needed, were identified. This paper also identifies five key mental health research priority areas which could form the basis for effective mental health research and development strategies in Cambodia. ConclusionThere is a clear need for the Cambodian government to devise a clear policy framework for health research. This framework could focus on the five research domains identified in this paper and could be incorporated within its National Health Strategic plans. The implementation of this approach would likely lead to the development of an evidence base which would allow the development of effective and sustainable strategies for mental health problem prevention and intervention. This would also contribute to promote the Cambodian government’s capacity to take the deliberate, concrete, and targeted steps necessary to address the complex mental health needs of its population.

Research priority setting in emergency care: A scoping review.

Priority areas for emergency care research are emerging and becoming ever more important. The objectives of this scoping review were to (1) provide a comprehensive overview of published emergency care priority-setting studies by collating and comparing priority-setting methodology and (2) describe the resulting research priorities identified. The Joanna Briggs Institute methodological framework was used. Inclusion criteria were peer-review articles available in English, published between January 1, 2008 and March 31, 2019 and used 2 or more search terms. Five databases (Scopus, AustHealth, EMBASE, CINAHL, and Ovid MEDLINE) were searched. REporting guideline for PRIority SEtting of health research (REPRISE) criteria were used to assess the quality of evidence of included articles. Forty-five studies were included. Fourteen themes for emergency care research were considered within 3 overarching research domains: emergency populations (pediatrics, geriatrics), emergency care workforce and processes (nursing, shared decision making, general workforce, and process), and emergency care clinical areas (imaging, falls, pain management, trauma care, substance misuse, infectious diseases, mental health, cardiology, general clinical care). Variation in the reporting of research priority areas was evident. Priority areas to drive the global agenda for emergency care research are limited given the country and professional group-specific context of existing studies. This comprehensive summary of generated research priorities across emergency care provides insight into current and future research agendas. With the nature of emergency care being inherently broad, future priorities may warrant population (eg, children, geriatrics) or subspecialty (eg, trauma, toxicology, mental health) focus and be derived using a rigorous framework and patient engagement.

Research priorities for maternal and perinatal health clinical trials and methods used to identify them: A systematic review

ObjectiveResearch prioritisation helps to target research resources to the most pressing health and healthcare needs of a population. This systematic review aimed to report research priorities in maternal and perinatal health and to assess the methods that were used to identify them. MethodsA systematic review was undertaken. Projects that aimed to identify research priorities that were considered to be amenable to clinical trials research were eligible for inclusion. The search, limited to the last decade and publications in English, included MEDLINE, EMBASE, CINHAL, relevant Cochrane priority lists, Cochrane Priority Setting Methods Group homepage, James Lind Alliance homepage, Joanna Brigg’s register, PROSPERO register, reference lists of all included articles, grey literature, and the websites of relevant professional bodies, until 13 October 2020. The methods used for prioritisation were appraised using the Reporting Guideline for Priority Setting of Health Research (REPRISE). FindingsFrom the 62 included projects, 757 research priorities of relevance to maternal and perinatal health were identified. The most common priorities related to healthcare systems and services, pregnancy care and complications, and newborn care and complications. The least common priorities related to preconception and postpartum health, maternal mental health, contraception and pregnancy termination, and fetal medicine and surveillance.The most commonly used prioritisation methods were Delphi (20, 32%), Child Health Nutrition Research Initiative (17, 27%) and the James Lind Alliance (10, 16%). The fourteen projects (23%) that reported on at least 80% of the items included in the REPRISE guideline all used an established research prioritisation method. ConclusionsThere are a large number of diverse research priorities in maternal and perinatal health that are amenable to future clinical trials research. These have been identified by a variety of research prioritisation methods.

Should health research funding be proportional to the burden of disease?

Public funders of health research have been widely criticized on the grounds that their allocations of funding for disease-specific research do not reflect the relative burdens imposed by different diseases. For example, the US National Institutes of Health spends a much greater fraction of its budget on HIV/AIDS research and a much smaller fraction on migraine research than their relative contribution to the US burden of disease would suggest. Implicit in this criticism is a normative claim: Insofar as the scientific opportunities are equal, each patient merits research into their condition proportional to the burden of disease for which that condition is responsible. This claim—the proportional view—is widely accepted but has never been fully specified or defended. In this paper, I explain what is required to specify the view, attempt to do so in the most charitable way, and then critically evaluate its normative underpinnings. I conclude that a severity-weighted proportional view is defensible. I close by drawing out five key lessons of my analysis for health research priority-setting.

Comparing an in-person workshop and a postal Delphisurvey for involving health service users in health care and health research prioritization.

To involve health service users in health care and health research priority setting, different methods exist. Which method is most suitable under which circumstances is unknown. We compared a postal Delphi survey and an in-person workshop to involve health service users in priority settings for rehabilitative care and research in Germany. One hundred and eighty-four former rehabilitants were randomly assigned to a postal Delphi survey (n = 152) or an in-person workshop (n = 32). Two hundred and seventy-sixemployees in rehabilitation were also invited to the Delphi Survey. The methodological comparison refers only to the sample of rehabilitants. Within each method, the participants agreed on the top 10 priorities for practice improvement and research in rehabilitative care. The priorities were compared descriptively. Participants' satisfaction was measured with the Public and Patient Engagement Evaluation Tool. The usability of both methods was compared based on the effort, time and material costs required for implementation. Seventy-five formerrehabilitants and 41 employees in rehabilitation completed both Delphi survey rounds. Eleven former rehabilitants participated in the in-person workshop. Priorities for practice improvement showed a high degree of overlap between both methods whereas research priorities differed greatly. Participants of the in-person workshop felt significantly better prepared, more listened to and more likely to feel that different views on the topics were discussed. Participants of the Delphi survey expressed difficulties in understanding all survey questions. The Delphi survey was more elaborate in preparation and implementation but caused lower material costs. The differences in research priorities between the two methods could be due to the different samples, differences in the individual interests of participants or differences in the prioritization process. In-person workshops seem to be more appropriate for complex topics, where clarifications of questions and deeper discussions are needed. Delphi surveys seem to be more suitable for easily understandable topics, larger sample sizes and when fewer financial resources are available. The different study phases were supported by employees in rehabilitation and former rehabilitants (e.g., developing study documents, and interpreting results).

Comparing international dementia research priorities-Systematic review.

Research priority setting aims to collate stakeholder opinion to determine the most pressing research questions. Priority setting exercises influence decisions around research funding, development and policy. We compared published dementia research priority setting exercises from international healthcare systems. Four multidisciplinary, international, electronic databases were searched for relevant studies (2010 until 2021). Priorities were extracted, coded and assigned to categories using thematic analysis. The Nine Common Themes of Good Practice (9CTGP) and the Reporting guideline for priority setting of health research (REPRISE) checklists were used to assess methodological and reporting quality respectively. From 265 titles, 10 priority setting exercises (1179 participants, 147 priorities) were included. Studies spanned four continents and the majority included people living with dementia and their care-givers in the priority setting process (68%). Only one paper metall the best practice indicators. Issues around inclusiveness, implementation and evaluation of the priorities were apparent in nine papers. We categorised priorities under eight themes: caregivers (25%, n=37), support (24%, n=35), awareness and education (16%, n=24), drugs and interventions (14%, n=21), diagnosis (8%, n=12), pathology (6%, n=9), research design (5%, n=7), and prevention (1%, n=2). Priorities varied by geographical region, with awareness and education of higher priority in low-middle income countries, compared to caregivers and support in high income countries. Key priorities were identified with some commonality around themes considered of greatest importance. There is scope to improve the process and reporting of priority setting. Priorities differed according to contextual factors and so, priorities specific to one healthcare setting may not be applicable to others.

Research priority setting related to older adults: a scoping review to inform the Cochrane-Campbell Global Ageing Partnership work programme

ObjectiveTo explore and map the findings of prior research priority-setting initiatives related to improving the health and well-being of older adults.DesignScoping review.Data sourcesSearched MEDLINE, EMBASE, AgeLine, CINAHL and PsycINFO databases...

Overcoming structural barriers to sharing power with communities in global health research priority-setting: Lessons from the Participation for Local Action project in Karnataka, India

ABSTRACT Community engagement is gaining prominence in global health research. But communities rarely have a say in the agendas or conduct of the very health research projects that aim to help them. This paper provides new evidence on how to share power in priority-setting in ways that seek to overcome structural constraints created by the funding environment. The five strategies were identified through case study research on the Participation for Local Action project in Karnataka, India. That project was carried out by researchers in partnership with the Zilla Budakattu Girijana Abhivrudhhi Sangha, an indigenous community development organisation representing the Solega people. The paper describes each identified strategy for sharing power in priority-setting, followed by a report of the pitfalls and challenges that arose when implementing it. Thus, the study also demonstrates that even where actions and strategies are used to address power imbalances, pitfalls will arise that need to be navigated. Given those challenges, considerations to reflect upon before employing the identified strategies are suggested. Ultimately, the paper aims to communicate strategies for sharing power during and after priority-setting and lessons on how to implement them effectively that can be used by global health researchers in the current funding environment.

Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review.

BackgroundThe need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media–based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness.ObjectiveThis review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media–based research approaches, as well as recommendations for prospective campaigns.MethodsWe searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes.ResultsA total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform–based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members’ and external organizations’ social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand.ConclusionsSocial media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas.

How is inclusiveness in health systems research priority-setting affected when community organizations lead the process?

Community engagement is gaining prominence in health research. But communities rarely have a say in the agendas or conduct of the very health research projects that aim to help them. One way thought to achieve greater inclusion for communities throughout health research projects, including during priority-setting, is for researchers to partner with community organizations (COs). This paper provides initial empirical evidence as to the complexities such partnerships bring to priority-setting practice. Case study research was undertaken on a three-stage CO-led priority-setting process for health systems research. The CO was the Zilla Budakattu Girijana Abhivrudhhi Sangha, a district-level community development organization representing the Soliga people in Karnataka, India. Data on the priority-setting process were collected in 2018 and 2019 through in-depth interviews with researchers, Sangha leaders and field investigators from the Soliga community who collected data as part of the priority-setting process. Direct observation and document collection were also performed, and data from all three sources were thematically analysed. The case study demonstrates that, when COs lead health research priority-setting, their strengths and weaknesses in terms of representation and voice will affect inclusion at each stage of the priority-setting process. CO strengths can deepen inclusion by the CO and its wider community. CO weaknesses can create limitations for inclusion if not mitigated, exacerbating or reinforcing the very hierarchies that impede the achievement of improved health outcomes, e.g. exclusion of women in decision-making processes related to their health. Based on these findings, recommendations are made to support the achievement of inclusive CO-led health research priority-setting processes.

Research Recommendations Following the Discovery of Pain Sensitizing IgG Autoantibodies in Fibromyalgia Syndrome.

BackgroundFibromyalgia syndrome (FMS) is the most common chronic widespread pain condition in rheumatology. Until recently, no clear pathophysiological mechanism for fibromyalgia had been established, resulting in management challenges. Recent research has indicated that serum immunoglobulin Gs (IgGs) may play a role in FMS. We undertook a research prioritisation exercise to identify the most pertinent research approaches that may lead to clinically implementable outputs.MethodsResearch priority setting was conducted in five phases: situation analysis; design; expert group consultation; interim recommendations; consultation and revision. A dialogue model was used, and an international multi-stakeholder expert group was invited. Clinical, patient, industry, funder, and scientific expertise was represented throughout. Recommendation-consensus was determined via a voluntary closed eSurvey. Reporting guideline for priority setting of health research were employed to support implementation and maximise impact.ResultsArising from the expert group consultation (n = 29 participants), 39 interim recommendations were defined. A response rate of 81.5% was achieved in the consensus survey. Six recommendations were identified as high priority- and 15 as medium level priority. The recommendations range from aspects of fibromyalgia features that should be considered in future autoantibody research, to specific immunological investigations, suggestions for trial design in FMS, and therapeutic interventions that should be assessed in trials.ConclusionsBy applying the principles of strategic priority setting we directed research towards that which is implementable, thereby expediating the benefit to the FMS patient population. These recommendations are intended for patients, international professionals and grant-giving bodies concerned with research into causes and management of patients with fibromyalgia syndrome.

An assessment of perceived prioritisation and resource allocation for health policy and systems research in West Africa.

Globally, adequate funding is a strong underpinning to advance health policy and systems research (HPSR) and ensure its impact on strengthening health systems. This study examined the perceived prioritisation, and resource allocation for HPSR in West Africa. A desk review was conducted of literature related to HPSR funding published between January 2010 and December 2019, sourced from various databases and government websites. This was followed by in-depth interviews with senior decision makers and HPSR and non-HPSR research leaders (n = 33) across nine West African countries: Benin, Burkina Faso, Côte d'Ivoire, Gambia, Ghana, Liberia, Nigeria, Senegal and Sierra Leone. The majority of the study participants were from ministries of health in their countries (66.7%). All countries except Sierra Leone had a program dedicated to health policy research and/or health planning/program research. There was no specific funding for health research nor HPSR in most countries and a mixed model (demand and supply led) was employed in most instances. HPSR was only considered a priority in two of the nine countries and specific funding for it was non-existent in all nine countries. In all countries, donor agencies played predominant roles in setting health research priorities and resource allocation decisions. Infectious disease and maternal/child health research were the research categories with the highest level of funding. There was limited capacity for HPSR, with a pronounced gap between researchers and policy makers. Stakeholder advocacy, basket funding for health research, multi-stakeholder institutional and individual HPSR capacity building were the major recommendations for improving the status and funding of HPSR. This study showed that both health research and HPSR were considered low priorities, with no designated funding (budget line) and inadequacy of funding disbursement in the surveyed countries in West Africa. Health research was largely conducted as prioritised and funded by the donor agencies. Given donor fatigue and the transitioning of donor funding, and the pivotal role of HPSR in strengthening health systems, there is an urgent need for West African states to commit to prioritising and funding HPSR and HPSR capacity development.

Achieving inclusive research priority-setting: what do people with lived experience and the public think is essential?

BackgroundEngagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly.MethodsAn exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia.ResultsThree main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees.ConclusionsBased on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings.