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Making research matter: A civil society perspective on health research

Authors:
David Sanders at University of the Western Cape
David Sanders
Ronald Labonté at University of Ottawa
Ronald Labonté
Fran Baum at University of Adelaide
Fran Baum
Mickey Chopra
Mickey Chopra
Mickey Chopra
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Abstract

Complex global public health challenges such as the rapidly widening health inequalities, and unprecedented emergencies such as the pandemic of human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) demand a reappraisal of existing priorities in health policies, expenditure and research. Research can assist in mounting an effective response, but will require increased emphasis on health determinants at both the national and global levels, as well as health systems research and broad-based and effective public health initiatives. Civil society organizations (CSOs) are already at the forefront of such research. We suggest that there are at least three ways in which the participation of CSOs in research can be increased: namely, influencing commissioning and priority-setting; becoming involved in the review process and in conducting research; and through formal partnerships between communities and universities that link CSOs with academic researchers.
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... There is international recognition that accessing and using health research is a vital component of improving health and reducing health inequities [1]. However, there are substantial complexities that affect the way in which public health research is utilised for action in low and middle income countries (LMICs) [2,3]. The "unacceptable gap between unprecedented knowledge about diseases and their control, and implementation of that knowledge" described by Sanders et al. ([3], p.758), highlights the need for better utilisation of research evidence, particularly in LMICs where the burden of poor health and healthy inequity is high. ...
... The "unacceptable gap between unprecedented knowledge about diseases and their control, and implementation of that knowledge" described by Sanders et al. ([3], p.758), highlights the need for better utilisation of research evidence, particularly in LMICs where the burden of poor health and healthy inequity is high. Analysing the factors that contribute to this gap may contribute to enabling solutions for better utilisation of research in LMICs [3]. ...
... Some of these relate to the realities of living in resourcepoor settings, such as low levels of infrastructure and a lack of financial, technical and skilled human resources [10,11]. There are also complexities that are borne out of existing structural inequities, such as the historical influence of high-income countries in the field of global health and development, and questions of who and what shape the research agenda, and how this research is used [3,[12][13][14][15]. ...
Knowledge translation for public health in low-and middle-income countries: a critical interpretive synthesis
Article
  • Oct 2018
Abstract Background Effective knowledge translation allows the optimisation of access to and utilisation of research knowledge in order to inform and enhance public health policy and practice. In low- and middle- income countries, there are substantial complexities that affect the way in which research can be utilised for public health action. This review attempts to draw out concepts in the literature that contribute to defining some of the complexities and contextual factors that influence knowledge translation for public health in low- and middle- income countries. Methods A Critical Interpretive Synthesis was undertaken, a method of analysis which allows a critical review of a wide range of heterogeneous evidence, through incorporating systematic review methods with qualitative enquiry techniques. A search for peer-reviewed articles published between 2000 and 2016 on the topic of knowledge translation for public health in low- and middle – income countries was carried out, and 85 articles were reviewed and analysed using this method. Results Four main concepts were identified: 1) tension between ‘global’ and ‘local’ health research, 2) complexities in creating and accessing evidence, 3) contextualising knowledge translation strategies for low- and middle- income countries, and 4) the unique role of non-government organisations in the knowledge translation process. Conclusion This method of review has enabled the identification of key concepts that may inform practice or further research in the field of knowledge translation in low- and middle- income countries.
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... These varied operations illustrate NGOs' diverse potential engagement with HPSR as the end-user (the implementer) and/or funder, data source, author or collaborator. As such, they are a key stakeholder in HPSRthey can inform the HPSR research agenda, benefit from HPSR research, and disseminate HPSR findings to the study populations and other nonacademic stakeholders [48,49]. ...
... Entering into collaborations with NGOs working in the field of interest can benefit both partners in their shared aim of improving health outcomes [11,17,167]. NGO data and NGO-academic collaboration can be particularly valuable in action research, especially within the contexts of refining approaches to achieve the SDGs and developing research methods to collect high quality data in challenging settings [48,49,52]. HPSR is increasingly using the SDGs as a framework for agenda-setting [8]. ...
Repurposing NGO data for better research outcomes: A scoping review of the use and secondary analysis of NGO data in health policy and systems research
Article
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  • Jun 2020
  • Health Res Pol Syst
Background: Non-governmental organisations (NGOs) collect and generate vast amounts of potentially rich data, most of which are not used for research purposes. Secondary analysis of NGO data (their use and analysis in a study for which they were not originally collected) presents an important but largely unrealised opportunity to provide new research insights in critical areas, including the evaluation of health policy and programmes. Methods: A scoping review of the published literature was performed to identify the extent to which secondary analysis of NGO data has been used in health policy and systems research (HPSR). A tiered analytical approach provided a comprehensive overview and descriptive analyses of the studies that (1) used data produced or collected by or about NGOs; (2) performed secondary analysis of the NGO data (beyond the use of an NGO report as a supporting reference); and (3) analysed NGO-collected clinical data. Results: Of the 156 studies that performed secondary analysis of NGO-produced or collected data, 64% (n = 100) used NGO-produced reports (mostly to a limited extent, as a contextual reference or to critique NGO activities) and 8% (n = 13) analysed NGO-collected clinical data. Of these studies, 55% (n = 86) investigated service delivery research topics and 48% (n = 51) were undertaken in developing countries and 17% (n = 27) in both developing and developed countries. NGOs were authors or co-authors of 26% of the studies. NGO-collected clinical data enabled HPSR within marginalised groups (e.g. migrants, people in conflict-affected areas), albeit with some limitations such as inconsistent and missing data. Conclusion: We found evidence that NGO-collected and produced data are most commonly perceived as a source of supporting evidence for HPSR and not as primary source data. However, these data can facilitate research in under-researched marginalised groups and in contexts that are hard to reach by academics such as conflict-affected areas. NGO-academic collaboration could help address issues of NGO data quality to facilitate their more widespread use in research. The use of NGO data use could enable relevant and timely research in the areas of programme evaluation and health policy and advocacy to improve health and reduce health inequalities, especially in marginalised groups and developing countries.
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... If CSOs are to maximize their efforts in achieving more equitable health policies in LMICs, it is vital that their rights-based strategies be grounded in evidence. This is particularly true in the global health policy space, where globalization has resulted in a complex new landscape with shared human rights frameworks that CSOs must understand and negotiate at the national and international level [37,38]. In this respect, a determinant framework, which highlights contextual factors as indicative of programmatic success, may be particularly useful in highlighting the way political and legal realities can impact CSOs strategies. ...
What can implementation science offer civil society in their efforts to drive rights-based health reform?
Article
Full-text available
  • Jan 2023
Over the years, civil society organizations (CSOs) have made tremendous efforts to ensure that state policies, programmes, and actions facilitate equitable access to healthcare. While CSOs are key actors in the realization of the right to health, a systematic understanding of how CSOs achieve policy change is lacking. Implementation science, a discipline focused on the methods and strategies facilitating the uptake of evidence-based practice and research can bring relevant, untapped methodologies to understand how CSOs drive health reforms. This article argues for the use of evidence-based strategies to enhance civil society action. We hold that implementation science can offer an actionable frame to aid CSOs in deciphering the mechanisms and conditions in which to pursue rights-based actions most effectively. More empirical studies are needed to generate evidence and CSOs have already indicated the need for more data-driven solutions to empower activists to hold policymakers to account. Although implementation science may not resolve all the challenges CSOs face, its frameworks and approaches can provide an innovative way for organizations to chart out a course for reform.
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... A growing number of research funding agencies now require stakeholder engagement in funded research projects. For example, Methodology Standards for engaging patients in research developed by the US Patient-Centred Outcomes Research Institute (PCORI) documents five steps for patient engagement in research: 1) developing study questions and study design; 2) identifying the study population and choosing interventions, comparators, and outcomes; 3) developing strategies for recruitment and retention of study participants; 4) conducting the study; and 5) analysing results and disseminating research findings (PCORI Methodology Committee, 2013 [14]). ...
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... 6. Harnessing local knowledge through collaborative research between academicians & CSO for creation of baseline information for the implementation of the knowledge generated by research. 7. Rebuilding and restructuring academic research capacity weakened by the chronic underfunding [26,27] . ...
Tobacco control in the State of Himachal Pradesh, India: A review
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  • May 2022
There is a huge cultural acceptance of different forms of tobacco in different states of India and different part of world. With this background we aim to study some best practices in the state of Himachal Pradesh in tobacco control. This is based upon the challenges in the state which will enhance cross cultural competencies among various states of India towards the global tobacco endgame. This sharing and replication of best practices leads to focused and tailor-made approach in targeting areas and region with shared and overlapping needs. The state of Himachal Pradesh is considered as role model for the effective implementation of tobacco control among various states of India. This achievement was well accomplished by the multistakeholder engagement and integration in tobacco control. The challenge now lies in maintaining, sustaining and scaling tobacco control efforts. Effective monitoring through compliance studies from time to time still remains the best and practical solution for global tobacco endgame.
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... Additionally, the underrepresentation of the public was also a drawback. There is a need to foster bottom-up approaches where priority setting exercises are led by citizens and affected members of the society instead of only academics (Sanders et al., 2004). Admittedly, attracting the public in academic-led discussions and workshops has always been challenging and not common (Tomlinson et al., 2011;McGregor et al., 2014). ...
Improving Food Systems: A Participatory Consultation Exercise to Determine Priority Research and Action Areas in Viet Nam
Article
Full-text available
  • Oct 2021
With increased burden of malnutrition on global health, there is a need to set clear and transparent priorities for action in food systems at a global and local level. While priority settings methods are available for several adjacent domains, such as nutrition and health policies, setting priorities for food system research has not been documented and streamlined. The challenges involve food systems' multisector, multi-stakeholder and multi-outcome nature. Where data exists, it is not easy to aggregate data from across food system dimensions and stakeholders to make an informed analysis of the overall picture of the food system, as well as current and potential food system trade-offs to inform research and policy. Once research priorities are set, they risk staying on paper and never make their ways to concrete outputs and outcomes. In this paper, we documented and assessed the inclusive process of setting research priorities for a local food system, taking Vietnamese food systems as a case study. From this exercise, we examined how priority setting for food systems research could learn from and improve upon earlier priority setting research practices in other domains. We discussed the lessons for research and policies in local food systems, such as the need for a concrete follow-up plan accompanying the priority setting process.
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... Additionally, the underrepresentation of the public was also a drawback. There is a need to foster bottom-up approaches where priority setting exercises are led by citizens and affected members of the society instead of only academics (Sanders et al., 2004). Admittedly, attracting the public in academic-led discussions and workshops has always been challenging and not common (Tomlinson et al., 2011;McGregor et al., 2014). ...
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... There are several complexities, however, associated with how and to what extent research evidence is translated into policy and practice [2]. These complexities (also referred to as the "know-do" gap) can be explained by factors related to researchers, decision-makers, their engagement, and the context in which they operate [3][4][5][6][7]. For example, researchers may misunderstand the needs of decisionmakers and present the "right answers to the wrong questions" [8]. ...
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Article
Full-text available
  • May 2021
  • Health Res Pol Syst
Background In response to the “know–do” gap, several initiatives have been implemented to enhance evidence-informed decision-making (EIDM). These include individual training, organizational culture change management, and legislative changes. The importance of relationships and stakeholder engagement in EIDM has led to an evolution of models and approaches including integrated knowledge translation (IKT). IKT has emerged as a key strategy for ensuring that engagement is equitable, demand-driven, and responsive. As a result, the African-German Collaboration for Evidence-Based Healthcare and Public Health in Africa (CEBHA+) incorporated an IKT approach to influence noncommunicable diseases (NCD) policy and practice. We documented the phased process of developing, implementing, and monitoring the IKT approach in South Africa; and explored the appropriateness of using the exploration, preparation, implementation, and sustainment (EPIS) framework for this purpose. Methods We mapped the South Africa IKT approach onto the EPIS framework using a framework analysis approach. Notes of team meetings, stakeholder matrices, and engagement strategies were analysed and purposefully plotted against the four phases of the framework in order to populate the different constructs. We discussed and finalized the analysis in a series of online iterations until consensus was reached. Results The mapping exercise revealed an IKT approach that was much more iterative, dynamic, and engaging than initially thought. Several constructs (phase-agnostic) remained important and stable across EPIS phases: stable and supportive funding; committed and competent leadership; skilled and dedicated IKT champions; diverse and established personal networks; a conducive and enabling policy environment; and boundary-spanning intermediaries. Constructs such as “innovations” constantly evolved and adapted to the changing inner and outer contexts (phase-specific). Conclusions Using the EPIS framework to interrogate, reflect on, and document our IKT experiences proved extremely relevant and useful. Phase-agnostic constructs proved critical to ensure resilience and agility of NCD deliberations and policies in the face of highly dynamic and changing local contexts, particularly in view of the current coronavirus disease 2019 (COVID-19) pandemic. Bridging IKT with a framework from implementation science helps to reflect on this process and can guide the development and planning of similar interventions and strategies.
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... However, they also recognize that the contributions of these groups of actors has remained largely unexplored [22]. Findings from our study and similar studies show that sound evidence-informed policies require the inputs of different groups of actors, such as CSOs and labour unions, whose roles are becoming increasing noticeable in research priority setting and dissemination [22][23][24][25]. Different actors played different roles in developing the IMNCH strategy as well as in generating, disseminating or using evidence for strategy development. ...
Analysing key influences over actors’ use of evidence in developing policies and strategies in Nigeria: a retrospective study of the Integrated Maternal Newborn and Child Health strategy
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  • Apr 2016
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