Setting health research priorities using the CHNRI method: III. Involving stakeholders.

Abstract

Setting health research priorities is a complex and value–driven process. The introduction of the Child Health and Nutrition Research Initiative (CHNRI) method has made the process of setting research priorities more transparent and inclusive, but much of the process remains in the hands of funders and researchers, as described in the previous two papers in this series [1,2]. However, the value systems of numerous other important stakeholders, particularly those on the receiving end of health research products, are very rarely addressed in any process of priority setting. Inclusion of a larger and more diverse group of stakeholders in the process would result in a better reflection of the system of values of the broader community, resulting in recommendations that are more legitimate and acceptable. The CHNRI method, as originally proposed, took into account the importance of stakeholders and made provisions for their participation in the process. Although the involvement of a large and diverse group of stakeholders is desirable, they were not expected to propose research ideas, or score them against the set of pre–defined criteria. Because of this, the original CHNRI method proposed that stakeholders should be allowed to “weigh” pre–defined criteria and set “thresholds” for a minimum acceptable score against each criterion that would be required for a research idea to be considered a “research priority”. In choosing the stakeholders, the context of each exercise will be very important and the goals of the specific exercise should be defined before choosing an appropriate “stakeholder group”. Among stakeholders, we would expect to see those affected by the disease of interest and their family members, their carers and health workers, members of general public, media representatives interested in the topic, community leaders, representatives of the consumer groups and industry, but also potentially researchers and funders themselves. Although the latter two groups – researchers and funders – already have a different role assigned in the CHNRI process, this does not exclude them from also being stakeholders in the process [1,2]. In this paper, we aim to review and analyse the experiences in stakeholder involvement across the 50 CHNRI exercises published in the 10–year period between 2007 and 2016, the proposed approaches to involving stakeholders and their effects on the outcome of the prioritization process. One paper in the original CHNRI method series focused on involving stakeholders [3]. That paper presented practical experiences from three separate attempts to involve stakeholders that took place in 2006. The three groups approached were: (i) members of the global research priority setting network; (ii) a diverse group of national–level stakeholders from South Africa; and (iii) participants at a conference related to international child health held in Washington, DC, USA. Each group was asked to complete a short questionnaire to assess the relative importance of the five original CHNRI criteria. Different versions of the questionnaire were used with each group [3]. The results of this exercise indicated that groups of stakeholders vary in the weights they assigned to the 5 criteria, reflecting divergence in the “value” placed on each criterion by each stakeholder group. The diverse group of respondents within the priority–setting network placed the greatest weight on the criterion of “maximum potential for disease burden reduction” and the most stringent threshold on “answerability in an ethical way”. Among the attendees at the international conference on child health, the criterion of “deliverability, answerability and sustainability” was identified as the most important. Finally, in South Africa, where inequity has been a national problem historically, the greatest weight was placed on the “predicted impact on equity” criterion. This comparative analysis by Kapiriri et al. [3] effectively demonstrated that involving a wide range of stakeholders is an important goal for any research priority setting exercise. The criteria that may be of importance to funders, scientists and other technical experts involved in the process of planning and conducting the exercise may not be well aligned with the values of those who should eventually benefit from health research, or with the sentiments of wider society as a whole [3]. This is an important observation, because if the CHNRI process is conducted without regard for the broader social value or research, then it is unrealistic to expect it to fulfil its purpose of being accepted as a fair, transparent and legitimate process for setting investment priorities for health research.