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BMJ Global Health logoLink to BMJ Global Health
. 2026 Feb 24;11(2):e019904. doi: 10.1136/bmjgh-2025-019904

Patient, family and clinician priorities for critical care research in Asia and Africa: a James Lind Alliance Priority Setting Partnership using modified Delphi and nominal group techniques

CCAA Priority Setting Partnership Steering group1, Teddy Thaddeus Abonyo 2, Sumaiya Arfin 3,4, Diptesh Aryal 5,6, Abi Beane 1,7,✉, Martina Borellini 8, Arjen M Dondorp 9, Emma Donley 10, Punam Gautam 11, Tiffany E Gooden 12, Toto Gronlund 13, Rashan Haniffa 1,7, Madiha Hashmi 14, Poornima Kavlekar 15, Chamira Kodippily 16, Felix Limbani 17,18, Srilekha Madhav 15, Alupo Martha 19, Fatimah Mohamad 20, Subhasish Nayak 21, Ahmed Nayeem 22, Luigi Pisani 9,23, Cornelius Sendagire 24,25, Roshni Shakya 26, Ayesha Siddiqui 14, Bharath Kumar Tirupakuzhi Vijayaraghavan 27,28
PMCID: PMC12933803  PMID: 41735006

Abstract

Background

This James Lind Alliance (JLA) Priority Setting Partnership aimed to identify and prioritise unanswered questions important to adult patients, their families and health professionals with lived experience of critical care across Asia and Africa.

Methods

Modified Delphi techniques were used to generate suggestions using an online survey. Following verification, literature review and content analysis, these suggestions were iteratively codified into emergent topics. Topics were presented in a second online survey for ranking, prior to an online workshop where nominal group technique was used to identify top priority questions across stakeholder groups. Surveys were disseminated using snowballing techniques.

Findings

The project was coordinated by a representative steering group independently overseen by the JLA. The initial survey generated 432 candidacy suggestions from 17 countries. Review, content analysis and codification resulted in 51 candidacy questions, spanning 16 topics. A second shortlisting survey reached 124 clinicians and 86 patient-carer stakeholders, who ranked the most important topics and produced a shortlist of 18 candidacy topic questions. Representative stakeholders attending an online workshop prioritised the questions, with a tie for 10th and 11th place, resulting in a top 10+1 priority list. These spanned four themes: cost of care, infection and long-term recovery including psychological and socio-economic recovery following critical illness.

Interpretation

Cost, who would benefit from intensive care unit admission and organisation of healthcare dominated discussions irrespective of disease, injury or illness. Priorities were consistent between stakeholder groups. The JLA methodology enabled contributions from those with lived experience of critical care. The results of the prioritisation partnership provide a roadmap for researchers and funders seeking to address stakeholder priorities.

Keywords: Global Health, Health services research, Public Health, Interdisciplinary Research, Health economics


WHAT IS ALREADY KNOWN ON THIS TOPIC

  • Priority setting partnerships (PSPs) for critical care have, to date, been conducted almost exclusively in higher income settings. The aims of this study directly respond to the WHO and World Health Assembly recommendations for greater investment in discovery science and change research in critical care, infectious disease and rehabilitation following injury in low- and lower-middle-income countries.

WHAT THIS STUDY ADDS

  • The study reports research priorities from patient, public and clinical stakeholders with lived experience from 17 countries across Asia and Africa. Cost of care, infection (both disease and control) and long-term recovery (including socio-economic) following critical illness were prioritised by all stakeholders. Organisation of healthcare dominated nominal group discussions irrespective of disease, injury or illness.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

  • These findings highlight the need for diverse research methods in critical care research; specifically, health systems and implementation science and provide a potential roadmap for future global health research funding and policy.

Background

Critical care is an emerging specialty in low- and lower-middle-income country (LMIC) health systems and increasingly recognised as essential in the successful management of surgical cancer and cancer patients.1 In the wake of the COVID-19 global pandemic, governments, policy makers, funders and healthcare providers are increasingly seeking to invest in critical care services as a central tenet of acute care and pandemic preparedness. These investments are endorsed by recent WHO and World Health Association mandates.2 The growing availability of replicable, sequential data on critical care populations from LMICs has resulted in greater ability to benchmark care quality,3 identify variations in population characteristics and disease severity and in how the availability, suitability and implementation of evidence to manage patients may influence disparities in clinical outcomes. These variations in quality of care, highlighted by the Lancet Global Health Commission on High Quality Health Systems,3 reinforced the need for funding and research, both to understand barriers to accessing existing care, generate context-specific evidence to improve outcomes and to advance implementation strategies to enable greater adoption of evidence into practice.4

Recent reports from global funders have highlighted the gap that remains in the priorities of research funders and those on the front line delivering and receiving healthcare. Research agendas are dominated by medical perspectives and are informed by evidence and perceptions too often originating from a smaller subset of higher income countries. The priorities of the diverse stakeholders involved in healthcare, not least, patients and non-medical allied healthcare professionals (NMAPs), remain under-represented in research funding.5 6 Furthermore, the inclusion of representative stakeholders at the commissioning stage of funding remains limited.7

With the notable exception of a research priority survey conducted by the Indian Society of Critical Care in 2015, priority setting partnerships (PSPs) for critical care have, to date, been conducted almost exclusively in higher-income settings.8,10 In partnership with the James Lind Alliance (JLA), stakeholders from an existing critical care research collaborative (Collaboration for Research, Implementation and Training in Critical Care in Asia and Africa (CCAA)), aimed to identify the high-value, population-specific unanswered research questions regarding management of critically ill patients cared for in intensive care units (ICUs) as identified by frontline stakeholders from 17 countries (three WHO regions) who collaborate as part of CCAA.11 The JLA is a not-for-profit initiative bringing patients, carers and clinicians together in JLA PSPs. JLA PSP advisors provide methodological expertise, are committed to equality, diversity and inclusion and ensure PSPs are conducted in a fair and transparent manner.

Methods

Management

A steering group (SG) of 16 members, with representation from patients and their families (n=3 members), critical care (n=6) and allied specialty healthcare professionals (n=4) and research facilitators with expertise in consensus research methods (n=3) was convened. Of these members, 13 are permanently located in low- and lower-middle-income settings. SG members were selected following an invitation to submit an expression of interest (EOI) after the preplanning meeting. The SG and project were overseen by an independent advisor (TG) from the JLA who provided methodological expertise and oversaw project conduct throughout the PSP. Ethical approval was obtained from the Oxford Tropical Research Ethics Committee (ref. no. 512–23). Working directly for the SG were four information specialists, with expertise in participatory research methods, literature review and awareness of the clinical specialty.

Design

This PSP used methods recommended by the JLA for priority setting projects.12 13 These methods—two modified Delphi rounds and a prioritisation workshop using nominal group technique—have been applied internationally to successfully identify research priorities from all sectors of healthcare provision. These methods are increasingly being used internationally, with adaptations made to overcome language barriers, accommodate variation in the skills and experiences of participants and to enable engagement with individuals irrespective of health literacy.

The PSP was conducted in three phases over a 14-month period (9 May 2023–5 June 2024). The phases are described in the online supplemental file 1: Overview of the three phases and related steps of the PSP. Findings from each phase informed the next. The reporting of this PSP adheres to the Delphi studies in social and health sciences—Recommendations for an interdisciplinary STAndardized Reporting (DELPHISTAR) guidelines, and a checklist is available in online supplemental file 2.14

Scope, definitions and stakeholder selection

A pre-project planning meeting was conducted as part of a CCAA network investigator meeting held in September 2022. Attendees included representatives (healthcare workers, researchers and funders) from the CCAA collaborating LMICs (online supplemental file 3). The pre-project planning meeting set the terms of reference for the partnership with the JLA, the aim and scope of the project and the definitions used for the critical care population and intensive care in the context of the healthcare organisation.

Critical illness is complex and heterogeneous in nature affecting all people in society, indiscriminate of age, sex or socio-economic profile. Recognition and management of critical illness requires coordination of care delivered by a multidisciplinary team, including but not limited to the many specialties within the discipline of medicine, emergency care and surgery. This PSP therefore elected to use the UK Intensive Care Society’s (ICS) definition of critical care ‘those patients requiring level 2 or level 3 care’.15 The scope of the PSP was the adult population, defined as 17 years and older, meeting the ICS’s definition, was limited to critical care delivery inside the hospital and did not discriminate based on clinical specialty.

Survey participants consisted of any patient, carer, member of public or healthcare professional with direct lived experience of delivering critical care or of being critically ill (including those cared for through surgery, emergency medicine, obstetrics) within LMIC healthcare systems. Individuals who were primarily researchers, without clinical experience within the domain and setting, were excluded from participation. This decision was made to ensure that the priority questions identified reflected the priorities of those with lived experiences within the settings. This decision reflects the JLA’s fundamental ambition to hear from patients and their families and frontline clinicians not routinely involved in setting the clinical research agenda.16

Participation of patients with personal experience of critical care is challenging—given, for most, critical illness and critical care admission is unplanned, often associated with accident and trauma, and memories of the acute events or diseases for which they were managed in the ICU are often limited. It is often patients’ families and carers who have greater lived experience of the critical care journey. Therefore, families and informal carers with lived experience of a family member or client care for within the ICU were also invited to participate via existing ICU support, follow-up and patient and public involvement groups. Throughout the PSP, regional research capacity was also strengthened by emerging researchers, working as part of CCAA, joining the PSP as information specialists, developing skills in literature review, research coordination, mixed methods analysis and manuscript writing.17 Four information specialists were recruited during the lifecycle of the project. Candidates were all predoctoral, currently undertaking research training in LMIC settings and were selected and subsequently mentored by members of the SG trained in research methods at weekly meetings.

Survey creation

To promote the surveys and maximise participant engagement, several dissemination strategies were employed. First surveys were advertised by the JLA via their website. In parallel, the SG, together with CCAA national registry leads, was asked to disseminate the surveys 1 and 2 to their partner hospitals and clinical teams and to stakeholders known to their respective networks. Second, professional individual and societal contacts were engaged, using a snowballing technique, reaching out to potential respondents through their existing networks including national committees, professional healthcare bodies, critical care societies, existing patient and public engagement groups, social media accounts, email and word-of-mouth. Finally, SG discussions following survey 1 responses from patients, and in recognition of challenges faced by other ICU PSPs in engaging community members, ICU survivors known to critical care teams in CCAA partner hospitals were also approached by SG members and ICU clinicians for survey 2. In addition, patients, families and carers already known to clinician-researchers through existing ICU follow-up services and patient and public engagement activities were also asked to participate.

No minimum sample size was set. Similar JLA partnership projects have received upwards of 100 respondents.16 Survey 1 was planned to be online and open for 4 weeks, with responses monitored weekly and numbers reported to the SG. Monitoring the trajectory of responses, the SG extended the survey for a subsequent 2 weeks, until a plateauing of both number of responses and the nature of the unanswered uncertainties was observed. Survey 2 was initially planned to be live for 6 weeks and extended to 12 weeks. The findings of survey 2, along with the candidacy questions for the workshop, were then presented to the SG for ratification.

Phase 1: Identification of unanswered questions and development of candidacy questions

Survey 1 (online supplemental file 4) comprised a single instruction to elicit stakeholders’ views on their unanswered priorities about critical care and management. The survey used a purposefully open-ended question to enable participants to consider what questions are important to them based on their lived experiences of critical care. Participants were not limited in the number of questions they could pose. Clinician respondents were also asked to provide their location of clinical practice and their professional role. A pilot of the survey scoped less than five individuals representing different stakeholder groups sought to assess question construct, survey design and usability of the survey. Subsequently, edits were made to the survey to simplify language. The survey was written in English, with translation of the survey available on request. All translations were back-translated and checked for consistency. The online survey was built using REDCap electronic data capture tools.18

Anonymised survey 1 responses were collated, coded and categorised by the information specialists using emergent themes identified during content analysis. Themes identified represented different conditions, diseases and injuries associated with critical illness, the population of interest or an organisational aspect of service delivery (online supplemental file 5). Questions out of scope were retained for transparency of reporting to the SG but excluded from the literature and evidence review. Candidacy questions were then verified by reviewing the published literature for their scope. Incomplete survey responses were included in the analysis. Once emergent themes for the candidacy questions were identified, a literature search was conducted by the information specialists scoping for known gaps in research and the availability of existing published evidence (online supplemental file 6). Medline via Ovid and PubMed was searched without limitation of date or language. In addition, ongoing or impending research or reviews registered with ClinicalTrials.gov, PROSPERO and Cochrane relevant to the domains were searched.19,21 Search results were compiled and the candidacy questions reviewed for evidence using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach.22 Where evidence existed (defined as the question having one or more high quality study either published in a peer-reviewed journal, having a systematic review or meta-analysis published in a peer-reviewed journal or having internationally recognised and published guidelines), it was removed from the candidacy list. Two information specialists independently reviewed and codified themes, with a member of the SG consulted for resolution of conflicts. The SG reviewed and approved the candidacy questions prior to phase 2.

In consultation with the SG, and following the thematic review of survey 1 responses, the questions pertaining to infectious diseases which cut across the other emergent themes were also extracted from the survey responses. Review of emergent themes revealed that specific diseases/illnesses (eg, infectious disease) were being used to illustrate gaps in care processes and organisation of care which may be generalised to other conditions (ie, recognition of critical illness, treatment effectiveness and recovery). Discussion with the SG and a JLA advisor led to a recommendation that an additional section enabling selection and prioritisation of infectious diseases, in addition to the priority critical illness questions, be included in survey 2. This would enable future regional and seasonal exploration of infectious diseases (ID) for relevant critical illness populations beyond the priority list planned here. A long list of infectious diseases was collated, classified according to and compared with the WHO priority disease and epidemic and pandemic-prone disease lists for collaborating regions, missed diseases added and presented in survey 2.23,25

Phase 2: Identifying personally important unanswered research questions and diseases of interest

In survey 2, respondents were first asked to select all questions that they felt were personally important to them, creating their personal shortlist. From this personal shortlist, participants were then asked to select their top 10 questions. In addition, respondents were asked to select 10 of their priority infectious diseases. Responses were collated, checked for completeness and where contact information was available, incomplete surveys were returned to the participants and support offered to enable completion. The selection of questions to go forward to the final workshop was based on those most highly ranked, stratified across the stakeholder groups. Results from phase 2 were presented to the SG and approved for scope, confluence and completeness prior to inclusion in phase 3. In accordance with JLA guidance, this is usually up to 18 questions, seeking to maximise inclusion of candidate questions while ensuring the number of questions remains manageable within the constraints of the final workshop.13

Phase 3: Prioritisation workshop

The third and final stage of the PSP was an online prioritisation workshop conducted over two half days. The workshop aimed to build consensus in order to rank the remaining uncertainties and agree on the top 10 intensive care research priorities using nominal group technique. The workshop was facilitated by JLA advisors independent of the SG to ensure fairness, transparency and replicability with other JLA PSPs. Given the breadth of geographic locations included in the PSP and the ambition to ensure equitable opportunity to participate, the SG elected to hold the workshop online as two consecutive virtual events. The SG was consulted for adaptations needed to ensure that the process remained inclusive and accessible. Consultation resulted in an optional preworkshop orientation session being offered, to enable workshop participants to familiarise themselves with the JLA processes, the candidacy questions and ensure any technical support could be facilitated to optimise engagement and minimise disruptions during the workshop. In parallel, participants were contacted by an information specialist to explore any individual support they might need to enable participation; this included the opportunity to participate in the discussions, joining from a local healthcare facility or research institute and the opportunity for translation and literacy support before and during the workshop.

Participation in the workshop was open to all survey 2 respondents, who were invited to submit an expression of interest, along with a brief description in support of their participation and a declaration of any conflicts of interest. Submitted expressions of interest were then reviewed by the SG and participants selected to ensure representation of sex, lived experience, WHO region and, if relevant, their clinical specialty. Clinician participants’ selection was further prioritised based on their breadth of experience and availability to attend the workshop on the proposed dates. SG members were given the option to attend the workshop as observers. Once participants’ attendance was confirmed, they were sent background information on the decision-making process and a list of the topics for prioritisation in advance of the workshop. As a starting point, they were asked to identify their highest and lowest priorities (‘top three’ and ‘bottom three’) to initiate discussion during the workshop.

The workshop comprised a series of representative small group and plenary consensus development sessions and plenary sessions to share information. The first small group session enabled the participants to share their highest and lowest priorities. In the second small group session, participants were facilitated to prioritise all 18 questions, 1–18. The four small group priority orders were then combined. In between each session, the JLA facilitators produced combined priority lists. In the third session, the shared combined order was reviewed and revised by the new groups. The final priority order was the combined order of the third session groups. The workshop was convened of four groups of six participants each, comprising three healthcare professionals, one NMAP and two patient or carer representatives. Diversity of health system settings and gender was also considered for the groupings following Lancet guidance on equity in research.26 Participants were rotated between the groups during the workshop to maximise engagement and ensure participants could benefit from the diverse views and experiences of the whole group.

Findings

A total of 176 participants with lived experience of intensive care in 17 countries participated in survey 1. Their roles: lived experiences and characteristics are detailed in table 1. A total of 432 candidacy suggestions were submitted. Suggestions were submitted as questions, statements or paragraphs, with varying descriptive detail. 97 candidacy suggestions were removed as out of scope, and 35 duplicates were merged, resulting in 304 candidacy suggestions being identified. These suggestions were collated into 16 interim themes to support literature review and content analysis (online supplemental file 5). Following iterative content analysis, all suggestions were encapsulated within 51 candidacy topic questions, which were verified as true uncertainties, that is, they could not be answered by completed or ongoing research evident from the published literature (figure 1).

Table 1. Role and demographic details of survey respondents.

Respondent characteristics Survey 1 Survey 2
Total respondents 176 Total respondents 210
Participants with lived experience of critical illness    
 Patients 8 (4.54%) 36 (16.6%)
 Carers and family members 9 (5.11%) 50 (23.1%)
Healthcare professionals    
 Doctors 117 (66.5%) 90 (42.9%)
 Nurses 30 (17%) 30 (14.3%)
 Allied health specialists 12 (6.8%) 3 (1.4%)
 Not reported 0 1 (0.48%)
Age (years)    
 Under 18 29 4
 18–29 79 38
 30–39 48 79
 40–49 18 61
 50–59 3 15
 60–69 1 11
 70–79 0 2
Sex
 Male 96 (54.5%) 120 (57.1%)
 Prefer not to say 0 2 (<1%)
World Bank socio-economic country income groups*    
 Lower income 58 (27.6%)
 Lower-middle income 112 (53.3%)
 Upper-middle income 20 (9.5%)
 High-income 14 (6.7%)
 Not reported 6 (2.9%)

WHO regions: Africa region, Region of the Americas, Southeast Asian Region and East Mediterranean region. WHO regions (July 2024) (Internet) (citation accessed online 17 June 2025 (https://www.who.int/)).

*

World Bank list of economies (July 2024) (Internet)(citation accessed online 16 December 2024). Available online (https://www.ifrs.org/content/dam/ifrs/shop/world-bank-list.pdf).

Figure 1. Flow chart of respondents and responses.

Figure 1

Individual responses totalled 210 for survey 2, with patient and family contributions increasing on survey 1 from 10.23% (n=18) to 40.95% (n=86). The results were stratified by the respondent group. Of the 51 candidate topic questions, up to 18 of the questions could be taken forward to the final workshop. In box 1, the six questions highlighted in bold denote those which were in the 10 most important questions for both health care provider (HCP) and patient-carer stakeholder groups. The remainder were in the top 10 for one of the stakeholder groups (due to ‘tied’ ranks, there were in fact 11 and 13 candidacy questions in the top ‘10’ for HCPs and patient-carers, respectively).

Box 1. Candidacy questions taken forward from survey 2 to the prioritisation workshop.1,18.

Shortlisted candidacy questions

How can infection control/ isolation management in intensive care unit (ICU) be improved?

How can the cost-effectiveness of critical care services in ICU be improved (ventilation, organ support, blood transfusion) and (financial planning/ forecasting for patients and families)?

What is the burden, characteristics and pattern of multidrug-resistant infection in ICU?

What are the long-term impacts of COVID-19 on lung pathology and lung chronic disease?

Should care in ICU be standardised, and if so, how?

Which patients will most benefit from ICU care?

How effective are known antimicrobial stewardship strategies in the ICU context?

How may ICU services better prepare for future pandemics?

What are the outcomes currently, and what strategies can improve psychological recovery and physical rehabilitation following critical illness (including family/home interventions)?

What are the current practices, decision making and stakeholders’ perceptions regarding end of life and withdrawal of care in ICUs?

What are the outcomes of interest for patients and families after a critical illness?

How can effective management of shock in the ICU be improved (eg, steroids, anti-inflammatories, immune modulators)?

How can management and outcomes of priority endemic infectious diseases in ICU be improved (*research will include assessment of epidemiology, aetiology, incidence, current guidelines, characteristics and outcomes)?

How can ventilation management and weaning from mechanical ventilation in ICU be optimised?

What is the role of immune modulation in critically ill patients with sepsis?

How can management and outcomes of priority epidemic-prone/emerging infectious diseases in ICU be improved (*research will include assessment of epidemiology, aetiology, incidence, current guidelines, characteristics and outcomes)?

What strategies are effective in the early recognition of the critically ill patient in low- and lower-middle-income countries?

Steering group proposed question*: what are the socio-economic impacts of ICU care for critically ill patients and their families, and how do these factors influence decision making regarding treatment?

*Combined from the following three shortlisted questions:

What is the cost of ICU care for critically ill patients (separate for sepsis, trauma, etc)?

What cost/ economic factors determine decision-making regarding treatment choice and investigations in ICU?

How does being in the intensive care unit affect the patient’s and their family’s education, finances and overall economic situation?

Questions in bold denote those which were prioritised in the top 10 in survey 2 by both HCP and patient-carer stakeholder groups. Questions in italics were selected by the Steering group.

Four of the highest-ranking topic questions related to ICU costs and socio-economic impacts (one of them ranked second for patient-carers and sixth for HCP, the other three ranked joint third, fourth and fifth for patient-carers). While perhaps a good measure of internal validity, the overlap and number of related questions meant that final workshop attendees would have perhaps struggled to pick between these questions given their similarities. On consultation, the SG elected to combine three of these four questions into one question. Combining provided space for the next ranked questions. The SG reviewed the next four highest ranked questions, selecting topics not already included in what had become a list of 16. The additional two are highlighted in italics in box 1. The research themes which were subsequently shortlisted for the workshop are displayed in box 1. In total, 18 candidacy topic questions were shortlisted and taken forward to phase 3. Online supplemental file 7 contains the full list of topic questions in survey 2 together with their ranking. Survey 2 also prompted stakeholder prioritisation of WHO priority infectious diseases. The results are displayed in box 2 and will be a subject for future analysis and reporting of stakeholder and regional variation and prioritisation.

Box 2. Prioritised infectious diseases.

WHO listed priority infectious diseases

Tuberculosis

Malaria

Hepatitis

Coronavirus

HIV

Influenza

Dengue

SARS

Cholera

Typhoid fever

Measles

Those in bold were in the top 10 priorities for both HCP and patient-carer stakeholder groups.

The final workshop was attended by 16 healthcare professionals, and eight patients and carers or public body representatives. Following two half-day sessions of discussion and ranking in small mixed groups, a list of topics was agreed, with a tie for 10th place, resulting in 10+1 priority topics for future research. These are displayed in table 2.

Table 2. The final 11 priority research topic questions.

Rank Topic question
1 How can the cost-effectiveness of critical care services in ICU be improved (critical care services including ventilation, organ support, blood transfusion and cost meaning financial planning/forecasting for patients and families)?
2 What are the socio-economic impacts of ICU care for critically ill patients and their families, and how do these factors influence decision making regarding treatment (socio-economic impacts including catastrophic healthcare expenditure, out of pocket expenditure, unsecured debt, loss of earnings, loss of employment)?
3 What strategies are effective in the early recognition of the critically ill patient in LMICs (especially those with sepsis)?
4 How can infection control/ isolation management in ICU be improved?
5 What are the outcomes currently, and what strategies can improve psychological recovery and physical rehabilitation following critical illness (including family/ home interventions)?
6 Which patients will most benefit from ICU care?
7 How effective are known antimicrobial stewardship strategies in the ICU context?
8 How can management and outcomes of priority epidemic-prone/emerging infectious diseases in ICU be improved (research will include assessment of epidemiology, aetiology, incidence, current guidelines, characteristics and outcomes)?
9 What are the current practices, decision making and stakeholders’ perceptions regarding end of life and withdrawal of care in ICUs?
10 How can effective management of shock in the ICU be improved (eg, management strategies included steroids, anti-inflammatories, immune modulators)?
10 How can management and outcomes of priority endemic infectious diseases in ICU be improved (research will include assessment of epidemiology, aetiology, incidence, current guidelines, characteristics and outcomes)?

ICU, intensive care unit.

Interpretation

This PSP was successful in engaging a broad range of stakeholders from multiple countries, enabling those with lived experience of critical care to identify, discuss and prioritise the topics for future research in critical care that are important to them. 11 priority topic questions were identified through this PSP. The topics reflect the continuum of the pathway of care for critically ill patients, spanning recognition of critical illness in the pre-ICU setting through to medium to long term outcomes, including psychological as well as physical recovery. The costs associated with the organisation of critical care and who may best benefit from such services dominated discussions.

The final 11 priorities which extend beyond the walls of the ICU are not specific to the speciality patient groups for which critical care is often provided. Many JLA PSPs for other specialities have benefited from narrower scopes, to ensure the PSP findings resulted in clear themes and specific research questions. This may, however, be challenging in the context of critical care, where the focus of the PSP may then need to be population, disease or treatment specific. Instead, this PSP purposefully kept the scope broad, reflecting the different health systems in which critical care is delivered and the diversity of patient populations cared for. The intention was to enable participants to freely express priorities based on their lived experiences. Despite an absence of limitation or direction of focus for participants, eight of the 11 priority questions centred on two topics: economic factors and medium to long term psychological and physical recovery following critical illness.

Economic-related topics dominated all stakeholder groups’ priorities, and this was true for respondents regardless of country income status or their health system experiences. ‘Cost of care’ as a research topic, in the context of this PSP, included direct healthcare expenditure, out of pocket expenditure and indirect financial losses for both patients and their families. Prioritisation of the financial aspects of care, and, specifically, how costs impact patients and families, is a new priority compared with previous PSPs published for both critical care and allied acute specialities.27 Given estimates from LMICs report up to 50% of health-related expenses being paid out-of-pocket, compared with just 16% in high-income countries, the importance to LMIC stakeholders is perhaps not surprising.28 Recent literature further describes how patients self-ration their access to care due to cost.29 The influence of cost and related economic factors on clinician decision making in critical care is less explored, but inequalities in long-term recovery following surgery, trauma and oncology for those from lower socio-economic groups are described.30 Future work is needed to better understand patient and healthcare provider perceptions of cost-benefit within critical care and how these perceptions may influence clinical decision making.

Outcomes for critical care survivors, encompassing which patients would likely benefit from ICU care, decision making regarding withdrawal of critical care therapies and medium to long term psychological and physical recovery for critical care survivors were equally prioritised. International research undertaken in the wake of COVID-19 and for sepsis populations more broadly has highlighted the burden and impact of post intensive care syndrome (PICS)31 across international patient populations, on both individual patient recovery and population economic growth. Research regarding PICS has to date been generated from higher income countries, revealing risk, severity and trajectory of recovery for ICU survivors is influenced by several factors, including genetics, underlying disease burden, access to rehabilitation services and socio-economic status.32 As survival from critical illness continues to improve globally, investment in services to facilitate recovery from critical illness, physiotherapy, speech and language and dietetics is increasingly seen as essential. The scarcity of publicly available services is scarcest in lower-income countries.33 This scarcity, along with its impacts on surgical, trauma and sepsis outcomes, alongside societal and economic growth, is articulated at the recent WHO Africa regional office meeting.34 Such variations in service provision, combined with differences in social and organisational structures, are likely to mean more setting-specific research is required; both to determine how best to address disparities in long-term outcomes and to identify financially sustainable models for service provision.

Infectious diseases (tuberculosis, malaria, hepatitis and coronavirus (box 2)) infection control and antimicrobial stewardship were similarly prioritised by survey respondents and the importance of these topics was reiterated by participants during the workshop. This is perhaps unsurprising given the impact of the COVID-19 pandemic and its likely lasting impression on many clinicians and patients globally. Along with antimicrobial resistance, severe infection is increasingly considered a global public health priority.29 Published estimates of antimicrobial use in ICU populations in Asia regions are limited. A study from Nepal reports upwards of 85% of patients admitted to critical care receive antimicrobials during their ICU admission.35 Studies seeking to estimate the burden of in-hospital antimicrobial use in other South and South East Asian countries report estimates between 70% and 95%.36 37 The prioritisation of these topics by participants in this PSP could be interpreted as a call for a continuation of clinical trials in LMICs. However, simply generating further evidence through RCTs alone may not be sufficient. While complex study designs (such as platform or adaptive) could offer efficiency, flexibility and maximum potential impact for patients, high quality trials remain expensive and can be challenging to deliver. Exploration is needed to understand the relationship among existing clinical practice, the current evidence recommended and how disease, laboratory, medications integrity, cultural and economic differences in critical care populations may be driving current prescribing practice and perpetuating antimicrobial resistance.

Limitations

The wide geographic scope of this PSP meant that conducting each phase of the project online was essential to enable participation from stakeholders in both the SG and the prioritisation workshop from all settings. Online participatory research has been shown to overcome barriers of travel, cost and even promote ‘safe space’ for those expressing their views; however, it does raise new potential biases in relation to Information technology (IT) literacy and access to IT infrastructure for potential participants.38 While this PSP sought to mitigate against these through the support and preworkshop planning meetings described in the Phase three: prioritisation workshop section, it is recognised that marginalised and minority communities are likely under-represented.

The processes established by the JLA were essential to enable invaluable patient and lay person contributions to the discussion and final selection of topics. While this PSP did achieve incremental growth in participation from patients and lay persons, and participation was higher for this group than in other PSPs for critical care undertaken internationally,5 16 this group of stakeholders only made up 24.3% of the survey respondents and 33% of the workshop attendees. Previous prioritisation exercises conducted in critical care elsewhere have also sought to engage patients and family members with limited success. Reasons for these limitations in engagement have included the scope of the PSP and the nature of ICU meaning patient recall may be limited. Patient and public engagement groups may have an important role to play in increasing future engagement and advocacy both within service improvement and research planning. Furthermore, while the JLA process ensured inclusion of and a focus on stakeholders with direct lived experiences of critical care, this was at the exclusion of academic researchers without a bedside role. While intentional for the purposes of this prioritisation exercise, the priorities identified are likely to be missing potential early-stage translational research topics, which are more likely to be identified and promoted by basic scientists and allied research professionals. We would therefore recommend complementary work which may build on the results here and strengthen funding priorities.

Conclusion

This PSP has identified unanswered priorities for research for critical care services specific to health systems in LMICs. Four themes: cost of care, infection and long-term recovery, including psychological and socio-economic recovery following critical illness, were prioritised. The breadth of the themes identified reinforces the diversity of the critical care patient and their journey and highlights how stakeholder research priorities were much broader and relatable to all aspects of healthcare delivery. This contrasts with the illness models, drug development and experimental treatments, which so often dominate acute and critical care research funding. Disciplines of social science, implementation science and approaches to future research agendas which draw on participatory research methods will be important tools for tackling the priorities identified here. This may mean that funders, national bodies and collaborations from the broader healthcare funding landscape outside of critical care may need to be engaged by clinicians and researchers to secure funding.

Supplementary material

online supplemental file 1
bmjgh-11-2-s001.xlsx (157.1KB, xlsx)
DOI: 10.1136/bmjgh-2025-019904
online supplemental file 2
bmjgh-11-2-s002.xlsx (19.2KB, xlsx)
DOI: 10.1136/bmjgh-2025-019904
online supplemental file 3
bmjgh-11-2-s003.docx (1.6MB, docx)
DOI: 10.1136/bmjgh-2025-019904

Acknowledgements

The JLA-CCAA PSP gratefully acknowledges the support and contribution of all patients and their families, CCAA project team members and collaborating organisations (critical care societies, patient and public engagement groups and the Sepsis Alliance), who participated in this project.

Footnotes

Funding: The costs for the JLA and for the participants were funded by NICST, a UK charity (reg no:11771106) whose aims and objectives align with the objectives of this priority setting exercise. Participants who attended the two consecutive sessions of the workshops in full were eligible for remuneration for their time. Remuneration was optional and made in line with the NIHR guidance for patient and public engagement activities. Information specialists and publication were funded by Wellcome Innovations Flagship Critical Care Asia and Africa 224048/Z/21/Z. For Open Access, the author has applied a CC BY NC public copyright licence to any Author Accepted Manuscript arising from this submission.

Provenance and peer review: Not commissioned; externally peer reviewed.

Handling editor: Mark G Shrime

Patient consent for publication: Not applicable.

Data availability free text: Raw data from surveys will be retained for 5 years in keeping with the Wellcome-CCAA data management plan. These data are available on request from info@nicslk.com.

Collaborators: CCAA Priority Setting Partnership Steering group: Teddy Thaddeus Abonyo (Aga Khan University hospital, Nairobi, Kenya), Sumaiya Arfin (Amsterdam Public Health (APH), Amsterdam University Medical Centre (UMC), Amsterdam, The Netherlands; Mahidol-Oxford Tropical Medicine Research Unit (MORU), Bangkok, Thailand), Diptesh Aryal (Nepal Intensive Care Research Foundation (NICRF), Kathmandu, Nepal; D'OR Institute for Research and Education, Rio de Janeiro, Brazil), Abigail Beane (Pandemic Sciences Hub and Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK), Martina Borellini (Doctors with Africa CUAMM, Iringa, Tanzania), Arjen M Dondorp (Mahidol-Oxford Tropical Medicine Research Unit (MORU), Bangkok, Thailand), Emma Donley (Vrije Universiteit Amsterdam, Athena Institute, Amsterdam, The Netherlands), Punam Gautam (Hospital Operations, Nepal cancer hospital, Kathmandu, Nepal), Tiffany Gooden (Department of Applied Health Sciences, University of Birmingham, Birmingham, United Kingdom), Toto Gronlund (James Lind Alliance, National Institute for Health Research, University of Southampton), Rashan Haniffa (Pandemic Sciences Hub and Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK; Critical care, Mahidol-Oxford Tropical Medicine Research Unit (MORU), Bangkok, Thailand; NICS-MORU, Colombo, Sri Lanka), Madiha Hashmi (Ziauddin University, Karachi, Pakistan), Poornima Kavlekar (Patient and public representative, on behalf of Critical Care Consultants Group: Apollo Hospital Group. Chennai, India), Chamira Kodippily (NICS-MORU, Colombo, Sri Lanka), Felix Limbani (Lung Health Research Group, Malawi Liverpool Wellcome Programme, Blantyre, Malawi; Clinical Sciences, Liverpool School of Tropical Medicine, Liverpool, UK), Srilekha Madhav (Patient and public representative, on behalf of CCCG: Apollo Hospital Group. Chennai, India), Martha Alupo (Department of Nursing, MNRH, Mulago National Referral Hosp, Kampala, Uganda ; Critical care, Mulago National Referral Hospital, Kampala, Uganda), Fatimah Mohamad (Anaesthesiology and Critical Care, International Islamic University Malaysia, Kuantan, Malaysia), Subhashish Nayak (Department of Anesthesiology & Critical Care, All India Institute of Medical Sciences, Bhubaneswar, India), Ahmed Nayeem (Critical Care Research Group, Ziauddin University, Pakistan), Luigi Pisani (Department of Precision-Regenerative Medicine and Jonic Area (DiMePRe-J), Section of Anesthesiology and Intensive Care Medicine, University of Bari "Aldo Moro", Bari, Italy; Mahidol Oxford Tropical Research Unit (MORU), Bangkok, Thailand), Cornelius Sendagire (Anaesthesia & Critical Care, Makerere University, Kampala, Uganda; Critical care, Instituto D'Or de Pesquisa e Ensino, Rio de Janeiro, Brazil), Roshni Shakya (Research Coordinator, Nepal Intensive Care Research Foundation, Kathmandu, Nepal), Ayesha Siddiqui (Ziauddin University, Karachi, Pakistan), Bharath Kumar Tirupakuzhi Vijayaraghavan (Apollo Main Hospital, Chennai, India, Centre for Inflammation Research, University of Edinburgh, U.K).

Patient and public involvement: Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.

Author note: The reflexivity statement for this paper is linked as online supplemental file 3.

Contributor Information

CCAA Priority Setting Partnership Steering group:

Teddy Thaddeus Abonyo, Sumaiya Arfin, Diptesh Aryal, Abigail Beane, Martina Borellini, Arjen M Dondorp, Emma Donley, Punam Gautam, Tiffany Gooden, Toto Gronlund, Rashan Haniffa, Madiha Hashmi, Poornima Kavlekar, Chamira Kodippily, Felix Limbani, Srilekha Madhav, Alupo Martha, Fatimah Mohamad, Subhashish Nayak, Ahmed Nayeem, Luigi Pisani, Cornel Sendagire, Roshni Shakya, Ayesha Siddiqui, and Bharath Kumar Tirupakuzhi Vijayaraghavan

Data availability statement

Data are available upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

online supplemental file 1
bmjgh-11-2-s001.xlsx (157.1KB, xlsx)
DOI: 10.1136/bmjgh-2025-019904
online supplemental file 2
bmjgh-11-2-s002.xlsx (19.2KB, xlsx)
DOI: 10.1136/bmjgh-2025-019904
online supplemental file 3
bmjgh-11-2-s003.docx (1.6MB, docx)
DOI: 10.1136/bmjgh-2025-019904

Data Availability Statement

Data are available upon reasonable request.


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