Elsevier

Social Science & Medicine

Volume 151, February 2016, Pages 215-224
Social Science & Medicine

Towards deep inclusion for equity-oriented health research priority-setting: A working model

https://doi.org/10.1016/j.socscimed.2016.01.018Get rights and content

Highlights

  • Justice requires national health research priority-setting to promote health equity.

  • A wide range of stakeholders attains shallow inclusion in research priority-setting.

  • Deep inclusion demands breadth, qualitative equality, and non-elite participation.

  • Achieving all three dimensions is necessary for priority-setting to advance equity.

Abstract

Growing consensus that health research funders should align their investments with national research priorities presupposes that such national priorities exist and are just. Arguably, justice requires national health research priority-setting to promote health equity. Such a position is consistent with recommendations made by the World Health Organization and at global ministerial summits that health research should serve to reduce health inequalities between and within countries. Thus far, no specific requirements for equity-oriented research priority-setting have been described to guide policymakers. As a step towards the explication and defence of such requirements, we propose that deep inclusion is a key procedural component of equity-oriented research priority-setting. We offer a model of deep inclusion that was developed by applying concepts from work on deliberative democracy and development ethics. This model consists of three dimensions—breadth, qualitative equality, and high-quality non-elite participation. Deep inclusion is captured not only by who is invited to join a decision-making process but also by how they are involved and by when non-elite stakeholders are involved. To clarify and illustrate the proposed dimensions, we use the sustained example of health systems research. We conclude by reviewing practical challenges to achieving deep inclusion. Despite the existence of barriers to implementation, our model can help policymakers and other stakeholders design more inclusive national health research priority-setting processes and assess these processes' depth of inclusion.

Introduction

A growing consensus holds that research funders should align their investments with national health research priorities (Global Ministerial Summit on Research for Health, 2008 and Ministerial Summit on Health Research, 2004). This requirement presupposes that such priorities exist and are just. Yet many low and middle-income countries (LMICs) don't (regularly) set national health research priorities. A systematic review of health research priority-setting in LMICs indicates that a total of 39 national processes were undertaken in English-speaking countries between 1996 and 2014 (McGregor et al., 2014). There has also been limited consideration of what constitutes justice in setting national health research priorities. Recently, scholars have argued that health research priority-setting should promote health equity as a matter of justice (Pratt and Hyder, 2015). This position is consistent with recommendations made by the World Health Organization (WHO) and at global ministerial summits that health research should serve to reduce health disparities between and within countries (Commission on Health Research for Development, 1990, World Health Organization Task Force on HSR, 2005 and Ministerial Summit on Health Research, 2004). It is also supported by accounts from philosophy and bioethics that link principles of global health justice to health governance (Ruger, 2011, Ruger, 2012 and Gostin, 2014). These accounts support global health equity as the goal of governance rather than improving the health of the greatest number worldwide.

In this paper, we adopt a middle-ground position: to achieve health equity is to reduce health inequalities by bringing groups up to at least a decent level of health. Philosophers have conceptualised the goal of health equity in various ways and it continues to be controversial. At a minimum, it demands that people reach a basic level of health understood in terms of subsistence or survival (Shue, 1996). Beyond this basic level, the sufficiency principle holds that it is morally valuable for people to attain the level of health required for a decent life over a “sufficient” life span (such as 75 years) (Powers and Faden, 2006: 62). Egalitarians have argued that health equity entails reducing shortfall inequalities in health status between actual achievement and the optimal level (i.e. the highest level of health achieved by a population in terms of morbidity and mortality indicators) (Ruger, 2009 and Ruger, 2010). These accounts emphasise that (some) priority should go to those whose health is substantially below a decent or optimal level of health (Powers and Faden, 2006, Ruger, 2009). Here, health equity is defined as being concerned with health inequalities between groups rather than individuals. This understanding is prevalent in health equity research and policy discourse (Asada, 2013).

Just health research priority-setting should promote the health of worst-off groups1 within countries, i.e. those groups who experience a sizeable (though not necessarily the absolute greatest) gap in their health status relative to a decent level of health. But how should such processes be structured to advance health equity? Policymakers need guidance. Yet no specific requirements for equity-oriented health research priority-setting have been identified (Nuyens, 2007).

A comprehensive account of equity-oriented health research priority-setting might include both procedural requirements (how processes ought to be structured and conducted) and substantive requirements (what the resulting decisions ought to be like). In this paper, we focus only on procedural requirements and, in particular, propose deep inclusion as a requisite procedural component of priority-setting. We do not take a position here on whether it's necessary to formulate substantive requirements. In their absence, however, inclusive processes may generate outputs that don't strongly promote health equity.

The idea of employing a deliberative process holds promise for equity-oriented research priority-setting. Relevant theories of justice in political philosophy generally call for relying on deliberative processes and norms to achieve fair or just priority-setting (Daniels, 2008, Ruger, 2010 and Young, 2000). These theories delineate ideal processes for deliberative decision-making, where diverse stakeholders discuss problems or claims of need and how to address them. Ideally, all stakeholders voice their ideas and the reasons behind them. They debate the pros and cons of various proposals. Proposals are refined or rejected and stakeholders coalesce around their preferred options (Young, 2000). Deliberation forges novel proposals that a majority of participants can endorse (Crocker, 2008). To achieve such a result, participants must be mutually aware of, and responsive to, one another's perspectives and needs, modifying their preferred priorities in light of other participants' proposals (Richardson, 2002). Ideally, deliberation should transform participants' perspectives from an initial “narrow and self-regarding” baseline to a more comprehensive understanding that takes others' needs and interests into account (Young, 2000: 112).

Deliberative processes and norms can be applied in priority-setting for health research. Inherent in existing accounts of deliberative democracy are norms such as inclusion, reciprocity, reasonableness, and publicity (Gutmann and Thompson, 2004, Young, 2000). All are likely to be important to achieving justice in priority-setting.

Supposing that equity is a core component of justice in health research priority-setting, the norm of inclusion is critical. Where countries exhibit major social and economic inequalities within their populations, it's likely that deliberative processes will merely reinforce the status quo, giving effective voice only to stakeholders with considerable power and resources and excluding the perspectives of disadvantaged groups (Young, 2000). Such conditions of inequality occur in many countries worldwide, at all levels of national income. Philosopher Iris Marion Young (2000) has argued that one way to counteract this distorting influence is to deepen democratic inclusion. Processes designed to be deeply inclusive are more likely to produce decisions that reflect the needs and interests of society as a whole (Young, 2000).

Deep inclusion is crucial to equity-oriented health research priority-setting for two reasons. First, it can lead participants to transform their opinions on what national research priorities should be from expressions of self-interest to a more complete account of what research is needed to serve the interests of the population as a whole, with particular attention to the worst-off. Those in structurally privileged positions often take their own experiences and preferences to be typical and uncontroversial, and they have the power to represent their views as general norms. Having to listen and answer to others who speak from different, less privileged perspectives can reveal otherwise unnoticed biases and partialities and lead people to reassess their positions (Young, 2000).

Second, deepening inclusion can enhance the social knowledge base used to set research priorities. Ensuring that people from disadvantaged social groups (e.g. women, the poor) are present and able to voice their opinions means that their needs and perspectives will be expressed and taken into consideration when identifying health research priorities. The priority-setting process will give rise to a fuller account of health sector shortfalls and research needs. Young (2000) argues that such an account can only be generated by pooling the situated knowledge of all social positions.

The main existing account of inclusion in priority-setting requires that a wide range of stakeholders be involved. The well-known and increasingly applied ‘accountability for reasonableness’ (A4R) framework considers inclusion to be a core aspect of its relevance condition and calls for the “inclusion of all affected by a decision, with particular attention to vulnerable groups” in priority-setting (Gruskin and Daniels, 2008: 1576).

A growing body of research assesses health priority-setting processes, primarily using the A4R framework. These assessments have been performed in Canada, Norway, Israel, Peru, Uganda, Tanzania, and Indonesia (Kapiriri et al., 2009; Greenberg et al., 2009, Maluka et al., 2010, Tomlinson et al., 2011, Romero and Quental, 2014, Zulu et al., 2014 and Tromp et al., 2014). They demonstrate that, in many cases, health priority-setting processes fail to achieve broad stakeholder involvement (Tomlinson et al., 2011, Kapiriri et al., 2009 and Greenberg et al., 2009).

Yet certain countries' experiences implementing A4R suggest that even meeting this standard of inclusion is not sufficient. Health research priority-setting in Panama shows that, while wide participation of stakeholders from health research, health care, and civil society occurred, it was not balanced. Of the 65 health care stakeholders, 25 were from the health ministry compared to only one from the Caja del Seguro Social, which provides health care to 60% of the Panamanian population (Romero and Quetal, 2014). Efforts to implement A4R in health care priority-setting at the district level in Tanzania have produced evidence that

[m]ore attention needs to be paid to issues of difference and inclusion. It was evident that while priority-setting was meant to be participatory, this was not the case. In practice, most of the district health plans were products of a few members of the CHMT [Council Health Management Team], with private partners and community bodies at best operating as a rubber stamp for decisions taken without their input. (Maluka, 2011: 7829)

Although private partners and community bodies were part of this priority-setting process, they were excluded from decision-making. Shayo et al. (2012) have also found that—even where health priority-setting processes in Tanzania included men and women representing a diverse array of income-levels, education-levels, and ethnicities—being male, having a higher income or education level, and/or being from the main ethnic group in the district-under-study meant that a person was listened to more seriously and had greater influence on the outcome.

These experiences indicate that further exploration of how inequalities are reproduced in priority-setting is necessary to identify requirements for meaningful inclusion. They demonstrate that including a wide range of stakeholders comprises a shallow form of inclusion when priority-setting is undertaken in contexts where social and economic disparities are rife. Relying on this form of inclusion will likely be inadequate to generate health research priority-setting outputs that reflect the health care and health system needs of worst-off groups. A model of deep inclusion should be developed for use where research priority-setting is conducted in the context of power inequalities.

As a step towards the explication and defence of procedural requirements for equity-oriented health research priority-setting, we propose an operationally-oriented model of deep inclusion. Deep inclusion comprises three dimensions: breadth (range and mass), qualitative equality, and the involvement of minority and disadvantaged groups, which Denis Goulet, 1995, Goulet, 2006 has termed “non-elite participation” (Fig. 1). The dimension of breadth captures who is involved in the priority-setting process while the latter two dimensions focus on how and when stakeholders can participate. To develop our model, we apply concepts from work on deliberative democracy and development ethics. (Development ethics as a field of study centers on international development and asks critical questions about its value, its declared goals, how it is pursued, and what benefits are gained and what burdens are imposed by it (Goulet, 1996).) We rely significantly on the scholarship of Young and Henry S. Richardson, as they each consider inclusion in contexts of power disparities, and that of Goulet, who has explored the phenomenon of non-elite participation (Young, 2000, Richardson, 2002, Goulet, 1995 and Goulet, 2006).

To clarify and illustrate the three proposed dimensions of deep inclusion, understood as a candidate procedural requirement for equity-oriented health research priority-setting, we use the sustained example of a specific type of health research—health systems research (HSR). HSR is the production of new knowledge to improve the performance of health systems (WHO, 2009). It investigates how and why health systems fall short of their goals and it develops interventions to improve their functioning (Gilson, 2012). Interventions evaluated by HSR span a wide range and might include novel delivery mechanisms for existing health services, new methods of creating demand for health services, or community-based health insurance mechanisms.

Our choice of HSR as an example is informed by the suggestion that its priorities should be set independently from those of more disease-focused health research, using an interpretive approach. This involves a consultative process, convening a range of stakeholders to identify priority research topics and questions under those topics. Criteria for ranking research topics/questions are determined and used to generate a list of priorities that all stakeholders then validate. By contrast, technical disease-driven approaches to research priority-setting such as the Combined Approach Matrix methodology often determine what burden of specific diseases may be averted by developing new drugs and technologies, improving existing drugs and technologies, or extending the uptake of existing interventions. By linking HSR to specific diseases, rather than considering it as a whole, this method serves to systematically deprioritize such research and contributes to the fragmentation of the field (Ranson and Bennett, 2009).

If HSR priorities are better set through a distinct process, then a field-specific model of inclusive priority setting will be useful. A model of deep inclusion for HSR priority-setting is also of particular value because the final results of interpretive processes will depend significantly on the range of stakeholders consulted.

Section snippets

A working model of deep inclusion for research priority-setting

Young (2000) notes that inclusion involves not only who is invited to be present for a decision-making process but also how they are involved: do they have an opportunity to influence the process? Goulet (1995) asks, in addition, when are non-elites involved, at what stage(s) of the process do they participate? Bearing these distinctions in mind, we propose that deep inclusion consists of achieving breadth (range and mass), promoting qualitative equality, and promoting high-quality non-elite

Discussion

Truly just research priority-setting requires deep inclusion because it is essential to advancing health equity. The greater the depth of inclusion that national research priority-setting processes achieve, the more likely they will be to capture the interests and concerns of the worst-off, giving rise to research priorities that effectively help to reduce health inequalities within countries. Policymakers and other participants in national research priority-setting processes need guidance on

Conclusion

We have argued that inclusion is a vital component of research priority-setting because it is critical to advancing health equity. We have developed a working model of deep inclusion that stakeholders can use to design and evaluate priority-setting processes. We have also highlighted areas of work that need significant attention to fully put this model into practice. Despite the existence of clear barriers to achieving deep inclusion, our intention is not to discourage stakeholders from trying

Ethics approval

Ethical approval for this research was not required because it didn't involve human subjects.

Acknowledgements

BP is supported by an Australian National Health and Medical Research Council (NHMRC) Early Career Sidney Sax Public Health Overseas Fellowship (Award No. 1052346). The contents of this article are solely the responsibility of the authors and do not reflect the views of the NHMRC. At the time this manuscript was written, BP was supported by the Berman Institute of Bioethics as a Hecht-Levi fellow. MM is her mentor as part of the Hecht-Levi program. AAH and BP are also supported by the Future

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