Setting priorities in global child health research investments: addressing values of stakeholders

Aim

To identify main groups of stakeholders in the process of health research priority setting and propose strategies for addressing their systems of values.

Methods

In three separate exercises that took place between March and June 2006 we interviewed three different groups of stakeholders: 1) members of the global research priority setting network; 2) a diverse group of national-level stakeholders from South Africa; and 3) participants at the conference related to international child health held in Washington, DC, USA. Each of the groups was administered different version of the questionnaire in which they were asked to set weights to criteria (and also minimum required thresholds, where applicable) that were a priori defined as relevant to health research priority setting by the consultants of the Child Health and Nutrition Research initiative (CHNRI).

Results

At the global level, the wide and diverse group of respondents placed the greatest importance (weight) to the criterion of maximum potential for disease burden reduction, while the most stringent threshold was placed on the criterion of answerability in an ethical way. Among the stakeholders’ representatives attending the international conference, the criterion of deliverability, answerability, and sustainability of health research results was proposed as the most important one. At the national level in South Africa, the greatest weight was placed on the criterion addressing the predicted impact on equity of the proposed health research.

Conclusions

Involving a large group of stakeholders when setting priorities in health research investments is important because the criteria of relevance to scientists and technical experts, whose knowledge and technical expertise is usually central to the process, may not be appropriate to specific contexts and in accordance with the views and values of those who invest in health research, those who benefit from it, or wider society as a whole.When decisions on investments in health research are made, the term “stakeholders” refers to all individuals and/or groups who have interest in prioritization of those investments. The stakeholders will therefore comprise a large and highly heterogeneous group. Some apparent examples may include research funding agencies (eg, governmental agencies, private organizations, public-private partnerships, international and regional organizations, and taxpayers of a certain region), direct recipients of the funding (eg, researchers and research institutions), beneficiaries of the research (eg, policy makers and the general population of a country), and any other group with interest in prioritization process (eg, advocacy groups, journalists and media, lawyers, economists, experts in ethics, and many others).Two fundamental characteristics of any acceptable and successful priority setting process are legitimacy and fairness (1). In order to ensure the legitimacy and fairness of the priority setting decisions in health research investments, involvement of a wide range of stakeholders (and/or eliciting their values) is needed. Unfortunately, health research priorities are presently mainly driven by technical experts (2-5). The results of prioritization are therefore in danger of being mostly influenced by their personal views, with minimal input from representatives from the wider community who also may have interest in the process but lack technical expertise. Since the values and criteria important to scientists and technical experts may vary remarkably from those of other relevant stakeholders (6-8), the relevance of eliciting wider stakeholders’ input is increasingly being acknowledged (9-11). However, the main challenge is to develop a systematic, flexible, and repeatable strategy on how this can be achieved in different contexts.The literature on priority setting for health interventions identifies two main strategies: 1) stakeholders’ values may impact decisions through procedural processes (by having access to the decisions and the rationales behind the decisions, and by having the authority to deliberate on the decisions and influence the final outcome); 2) stakeholders’ values can be directly elicited using quantitative methods (through surveys where respondents rank, weigh, or rate their values) and qualitative methods (involving individual interviews, Delphi technique, complaints procedures or group discussions, concept mapping, citizen’s jury, and public meetings) (12). The main challenges in those attempts have mainly been the lack of capacity for some stakeholders to engage in meaningful deliberations (13) and how to practically incorporate the elicited stakeholders’ values in decision-making (12,14). This paper presents our suggestions and experiences on how the values and interests of large and diverse group of stakeholders could still be incorporated in decisions on health research investment priorities. We specified thresholds and weights needed to address stakeholders’ values within CHNRI methodology using three different versions of a questionnaire. We aimed to assess stakeholders’ values for priority setting in global health research investments. We tested questionnaires that presented different levels of complexity and detail of the questions that stakeholders’ representatives would be asked. We also aimed to evaluate different strategies of turning their responses into numerical thresholds and weights.