This study aimed to develop and pilot an equity lens that could help researchers in developing a more equity-oriented approach toward priority setting and agenda setting in systematic reviews.
Study Design and Setting
We developed an equity lens to guide the development and evaluation of a prioritization process and evaluate its outcomes based on the information derived from a discussion workshop and a comparison with the existing literature on the topic. We piloted the process section of the equity lens across the 13 structured priority-setting approaches in the Cochrane Collaboration.
Results
We devised an equity lens with two checklists: one to guide the process of priority setting (nine questions) and the other to evaluate the outcomes of priority setting (eight questions). Of the nine questions, seven questions were partially addressed by at least one of the prioritization projects. Two questions were not considered in any of them. The prioritization projects did not report sufficient outcome data, thus we could not explore the eight question on evaluating outcomes.
Conclusion
Currently, there are few strategies in the Cochrane Collaboration that explicitly address the research priorities of individuals from different sociodemographic groups. The equity lens for priority setting and agenda setting can help project teams to develop a more equity-oriented approach to set a research agenda and/or prioritize research topics. However, further studies are needed to evaluate its impact on the prioritization process.
Introduction
What is new?
Key findings
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Few strategies in the Cochrane Collaboration explicitly address the research priorities of disadvantaged populations.
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The equity lens can help project teams to develop a more equity-oriented approach to set a research agenda and/or prioritize research topics.
What this adds to what was known?
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This article introduces an equity lens for priority setting and agenda setting to guide the development of priority-setting processes and evaluate the outcomes of priority setting.
What is the implication and what should change now?
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Innovative approaches are needed to ensure that the research priorities of diverse stakeholders are considered.
Inequity in health has emerged as a leading issue in light of the findings of the Commission on Social Determinants of Health [1]. The Child Health and Nutrition Research Initiative (CHNRI) expresses concerns that some approaches in research investment, for example, allocation of investment in certain research topics, can increase health inequity [2]. The same concern has been raised regarding the topic selection process of systematic reviews, which provide a systematic synthesis of primary studies. In 2005, it was recognized that systematic reviews more often address health problems that are priorities in high-income countries (HICs), to the neglect of problems in low- and middle-income countries (LMICs) [3], [4]. Although strategies have been taken to change this [5], [6], there is still a considerable room for improvement, particularly considering the limited resources available in LMICs. A recent review of priority-setting strategies used by the World Health Organization has identified several uncertainties regarding the best methods for setting health research priorities and the need for more guidance on the process of setting research priorities in health care [7].
The Commission on Social Determinants of Health [1] defined health equity as the “absence of systematic differences in health, both between and within countries that are judged to be avoidable by reasonable action” and recommended measuring and understanding health inequity and assessing the results of action on addressing health inequities and inequitable conditions. Some priority-setting initiatives have addressed equity using economic or social approaches and identified effectiveness, ethics, equity, and answerability as specific criteria that can identify differences between research questions.
The Cochrane Collaboration (www.cochrane.org) is an international organization bringing together more than 28,000 clinicians, health care researchers, and consumers from 100 countries to prepare and maintain systematic reviews of the effects of interventions on health and related outcomes and promote the dissemination and accessibility of these reviews. In a survey and subsequent workshop at the 2008 Cochrane Colloquium (an annual gathering of Cochrane contributors), we recognized the need to improve the process of agenda setting and priority setting for Cochrane review topics to ensure more transparency, inclusiveness, and consider health equity. To achieve this goal, it is important to develop a process to identify and, if needed, prioritize interventions that could potentially reduce inequity or health problems that are more relevant to certain disadvantaged groups.
This article explores how groups can consider equity in the research priority–setting process, especially regarding prioritization of systematic reviews. We describe the development of an equity lens that could help researchers to develop a more equity-oriented approach toward priority setting and agenda setting. The “lens” provides a possibility to select, interpret, and use data from a specific position (in this case, to ensure an equity-oriented approach) [10]. We used the equity lens to evaluate the research priority–setting processes in the Collaboration to identify potential gaps to be addressed in the future. This lens fills a need by introducing a systematic approach to prioritizing topics with a potential impact on reducing inequity in health. Furthermore, it may increase the proportion of prioritized research questions that address health care interventions that are potentially effective in disadvantaged groups and interventions that can reduce the health equity gap. We describe the advantages and disadvantages of the equity lens and how it can be improved.
Section snippets
Developing an equity lens for priority setting and agenda setting of systematic reviews
The development of the equity lens for priority setting took place in three parts: (1) a workshop presenting survey results from a previous project, (2) a review of the literature, and (3) a final workshop for refinement of the equity lens.
In the first workshop (2008), we hosted an interactive workshop during the Cochrane Colloquium. About 15 people participated in the workshop. We presented a survey of research priority–setting exercises [11], and the group discussed important issues around
Developing the equity lens for priority setting and agenda setting
The equity lens helps researchers to approach the priority-setting project with an equity perspective. It could be used in developing a new priority-setting project, prospectively/retrospectively evaluating those processes or comparing different priority-setting methods. It includes two checklists: one focusing on the process of priority setting and the other on the outcome evaluation of the priority setting. The first checklist has nine questions about different steps of priority setting, from
Discussion
We developed an equity lens with 17 questions to guide the prioritization of topics for systematic reviews of health care interventions. These questions could potentially increase the proportion of prioritized research topics that aim to reduce the health equity gap and that include health care interventions targeted for disadvantaged groups. We can more easily assess the impact of the equity lens if project teams incorporate process and outcome evaluations in their priority-setting projects.
Conclusion
The equity lens for priority setting and agenda setting can help project teams to develop a more equity-oriented approach to set a research agenda and/or prioritize research topics. It could be used in developing a new priority-setting project, prospectively/retrospectively evaluating those processes, or comparing different priority-setting methods. Currently, few strategies in the Cochrane Collaboration explicitly address the research priorities of different sociodemographic groups. We need
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There are more references available in the full text version of this article.
The project aimed to rapidly identify priority topic uncertainties as a first step to identify future systematic review questions of pertinence to key international fecal incontinence (FI) stakeholders (patients, carers, health care professionals, policy makers and voluntary, community, or social enterprise representatives). The paper’s aim is to share our methods, experience, and learning with other groups planning to deliver a rapid priority setting exercise.
An evidence gap map incorporated three evidence streams: emerging evidence identified through horizon scanning; existing evidence identified through systematic searches of bibliographic databases; and FI stakeholder insights collected through an international survey. The evidence gap map was presented during an online workshop with stakeholders, where they shared their expertize to expand, refine, and rank topic uncertainties using ideation techniques, focus group discussions, consensus techniques, and online polling.
The multistep methods used to deliver this priority setting exercise resulted in identification of broad priority topic uncertainties. The methods appear to have high acceptability and engagement with participants but await full evaluation.
This project successfully followed robust methodology, building upon frameworks from published priority setting and evidence gap mapping projects while incorporating strong patient and public involvement components.
We concentrated efforts to identify and prioritise interventions that could potentially reduce disparities in the care of people with MS worldwide. Therefore, we made targeted determination to recruit people from different geographic areas, health care systems, income levels and from diverse cultural backgrounds (Nasser et al. 2013, The Lancet Neurology 2021, Wijeratne et al. 2021). The methods were informed by guidance from the Cochrane Priority Setting Methods Group.
Eliciting the research priorities of people affected by a condition, carers and health care professionals can increase research value and reduce research waste. The Cochrane Multiple Sclerosis and Rare Disease of CNS Group, in collaboration with the Cochrane Neurological Sciences Field, launched a priority setting exercise with the aim of prioritizing pressing questions to ensure that future systematic reviews are as useful as possible to the people who need them, in all countries, regardless of their economic status.
Sixteen high priority questions on different aspects of MS were developed by members of a multi-stakeholder priority setting Steering Group (SG). In an anonymous online survey translated into 12 languages researchers, clinicians, people with MS (PwMS) and carers were asked to identify and rank, 5 out of 16 questions as high priority and to provide an explanation for their choice. An additional free-text priority research topic suggestion was allowed.
The survey was accessible through MS advocacy associations’ social media and Cochrane web pages from October 20, 2020 to February 6, 2021. 1.190 responses (86.73% of all web contacts) were evaluable and included in the analysis. Responses came from 55 countries worldwide, 7 of which provided >75% of respondents and 95% of which were high and upper-middle income countries. 58.8% of respondents live in the EU, 23% in the Americas, 8.9% in the Western Pacific, 2.8% in the Eastern Mediterranean and 0.3% in South Eastern Asia. About 75% of the respondents were PwMS. The five research questions to be answered with the highest priority were: Question (Q)1 “Does MRI help predict disability worsening of PwMS?” (19.9%), Q5 “What are the benefits and harms of treating PwMS with one disease-modifying drug compared to another?” (19.3%), Q3 “Does multidisciplinary care by teams of different social and health professionals improve health outcomes and experiences for PwMS?” (11.9%), Q16 “Does psychological health affect disease progression in PwMS?” (9.2%) and Q10 “What are the benefits and harms of exercise for PwMS?” (7.2%). The multivariable logistic regression analysis indicated a significant influence of geographic area and income level on the ranking of Q1 and a marginal for Q16 as top a priority after accounting for the effect of all other predictors. Approximately 50% of the respondents indicated that they had an important additional suggestion to be considered.
This international collaborative initiative in the field of MS offers a worldwide perspective on the research questions perceived as pivotal by a geographically representative sample of multiple stakeholders in the field of MS. The results of the survey could guide the prioritization of research on pharmacological and non-pharmacological interventions which could be meaningful and useful for PwMS and carers, avoiding the duplication of efforts and research waste. High quality systematic reviews elicited by priority setting exercises may offer the best available evidence and inform decisions by healthcare providers and policy-makers which can be adapted to the different realities around the world.
Three studies (43%) followed a common pathway for development including conducting a literature review, stakeholder input (survey or interview), and pilot testing [14,28,31]. Two of the approaches covered more than half of the steps identified for the development process (Table 2): one focused on an equity lens, whereas the other focused on health policy and systems [14,31]. In the study by Nasser et al., the ‘equity lens’ for setting priorities was developed following a workshop that presented survey results from a previous project on prioritization among Cochrane review groups; a review of the literature; and a final workshop for refinement of the equity lens [31].
The objective of the study was to systematically review the literature for proposed approaches and exercises conducted to prioritize topics or questions for systematic reviews and other types of evidence syntheses in any health-related area.
A systematic review. We searched Medline and CINAHL databases in addition to Cochrane website and Google Scholar. Teams of two reviewers independently screened the studies and extracted data.
We included 31 articles reporting on 29 studies: seven proposed approaches for prioritization and 25 conducted prioritization exercises (three studies did both). The included studies addressed the following fields: clinical (n = 19; 66%), public health (n = 10; 34%), and health policy and systems (n = 8; 28%), with six studies (21%) addressing more than one field. We categorized prioritization into 11 steps clustered in 3 phases (preprioritization, prioritization, and postprioritization). Twenty-eight studies (97%) involved or proposed involving stakeholders in the priority-setting process. These 28 studies referred to twelve stakeholder categories, most frequently to health care providers (n = 24; 86%) and researchers (n = 21; 75%). A common framework of 25 prioritization criteria was derived, clustered in 10 domains.
We identified literature that addresses different aspects of prioritizing topics or questions for evidence syntheses, including prioritization steps and criteria. The identified steps and criteria can serve as a menu of options to select from, as judged appropriate to the context.
Nutrition research can guide interventions to tackle the burden of diet-related diseases. Setting priorities in nutrition research, however, requires the engagement of various stakeholders with diverse insights. Consideration of what matters most in research from a scientific, social, and ethical perspective is therefore not an automatic process. Systematic ways to explicitly define and consider relevant values are largely lacking. Here, we review existing nutrition research priority-setting exercises, analyze how values are reported, and provide guidance for transparent consideration of values while setting priorities in nutrition research. Of the 27 (n = 22 peer-reviewed manuscripts and 5 grey literature documents) studies reviewed, 40.7% used a combination of different methods, 59.3% described the represented stakeholders, and 49.1% reported on follow-up activities. All priority-setting exercises were led by research groups based in high-income countries. Via an iterative qualitative content analysis, reported values were identified (n = 22 manuscripts). Three clusters of values (i.e., those related to impact, feasibility, and accountability) were identified. These values were organized in a tool to help those involved in setting research priorities systematically consider and report values. The tool was finalized through an online consultation with 7 international stakeholders. The value-oriented tool for priority setting in nutrition research identifies and presents values that are already implicitly and explicitly represented in priority-setting exercises. It provides guidance to enable explicit deliberation on research priorities from an ethical perspective. In addition, it can serve as a reporting tool to document how value-laden choices are made during priority setting and help foster the accountability of stakeholders involved.
Exactly how agreement is reached on what SRs should be conducted is not uniform across the global collaboration—factors such as the burden of a disease/risk factor are part of a more complex process that use a wide variety of methods to identify and rank topics for reviews, ranging from online surveys and web-based question submission options to face-to-face meetings with patients and clinicians. However it is important that the methods used should at least strive to be inclusive and open [15,16]. Our study highlights potential global inequities in health research and the need for all researchers and influential health organizations such as Cochrane, who have a global reach and commitment as a global provider of health evidence, to consider how best to address this.
Systematic reviews (SRs) are important for health-care decision-makers requiring evidence for interventions that target modifiable risk factors to prevent disease. We investigated whether Cochrane SR output correlated with risk factor burden as assessed by the Global Burden of Disease Study 2015.
We screened and extracted data from Cochrane reviews and protocols published since January 2011 investigating modifiable risk factors as outcomes. We calculated Spearman's rank correlation between number of occasions a risk factor was an SR outcome and that risk factor's global disease burden in disability-adjusted life years (DALYs). We also calculated standardized Pearson residuals (SPRs) of the variance between the observed and expected frequency of a risk factor featuring as an outcome.
We obtained 400 unique SRs and 174 unique protocols from 6,392 Cochrane publications. Risk factors were an outcome a total of 965 times. The number of SR outcomes and DALYs per risk factor shared a weak-positive correlation (r = 0.45) for all risk factors, but was high (r = 0.83) for metabolic risks, similar for behavioral risks (r = 0.46), and weak negative for occupational and environmental risks (r = −0.40). SPRs for “high total cholesterol”, “low bone mineral density”, “alcohol and drug use” , and “child and maternal malnutrition” inferred a higher than expected frequency of outcomes, and for “air pollution”, “dietary risk”, and “unsafe water, sanitation, and hand-washing”, fewer than expected.
Our study investigated whether Cochrane risk factor SRs align with global risk factor burden, demonstrating a weak-positive correlation. Interventions modifying air pollution and dietary risks were sparsely studied, given disease burden.
Conflict of Interest/Financial Disclosure: The project was partially funded by the Cochrane Collaboration Prioritization Fund. All of the authors are active members of the Cochrane Collaboration. The author team was involved in one of the prioritization projects described. There is no other conflict of interest to report.
