Stakeholder involvement in health research priority setting in low income countries: the case of Zambia

Summary While there is increasing recognition of the importance of stakeholder involvement in health research priority setting there is a paucity of literature reporting on stakeholder involvement in health research priority setting in low income countries. This paper fills this gap by identifying and discussing the roles and legitimacy of different stakeholders (including the public and patients) involved in the health research priority setting process in Zambia; identifying the barriers to public participation and proposing improvement strategies. We interviewed 28 policy makers and practitioners who had participated in the national level health research priority setting in Zambia. Reported participants in health research priority setting included research users, researchers, research funders and the community/ public. Research funders were thought to have undue influence while the public and patients were not effectively involved. This could be due to the public’s lack of education, lack of resources to facilitate public involvement and limited skills to meaningfully engage the public. Participation of people from rural areas, women and young professionals was also limited. While there is a commitment to broad stakeholder involvement in health research priority setting, there’s limited public/patient involvement. Public education, availing more resources, and skills to meaningfully engage the public need to be explored. The undue influence of research funders should be mitigated and incentives availed to ensure that they align their research funding with the national priorities. These efforts would strengthen meaningful stakeholder engagement in health research prioritization within Zambia and other similar contexts. Abstract Background Stakeholder involvement in health research priority setting contributes to the legitimacy and acceptability of the priorities. Hence legitimate priority setting should involve a broad representation of stakeholders including the public. While there is a growing body of literature on health research prioritization in low income countries, there is a paucity of literature reporting on stakeholder involvement in the process. The objectives of this paper are to; 1) identify the stakeholders who were involved in the health research priority setting process in Zambia; 2) discuss the roles and perceived legitimacy of the stakeholders and analyze the degree to which patients/ public was involved; 3) To discuss some of the barriers to stakeholder participation in Zambia and similar contexts and to propose improvement strategies. Methods This was a qualitative study involving 28 in-depth interviews with stakeholders who had participated in the national level health research priority setting exercises in Zambia. An interview guide was used. Audio recorded interviews were transcribed and analyzed using INVIVO 10. Analysis of the Stakeholders’ theme involved identifying the different dimensions of stakeholder involvement as discussed in the interviews. Results Identified stakeholders included; research users, researchers, research funders and the community/ public. We found that health research priority setting involved research users, researchers, research funders and the community/ public. However, research funders were thought to have undue influence while the public and patients were not effectively involved. While the respondents recognized the advantages of involving the public and patients, they were not effectively involved. This could be due to the public’s limited understanding of the technicalities of priority setting, lack of resources to facilitate public involvement and limited skills to meaningfully engage the public. Participation from rural areas, women, and young professionals was also limited. Conclusions While there is a commitment to broad stakeholder involvement in health research priority setting, the public is left out. Efforts such as public education, availing more resources, and skills to meaningfully engage the public need to be explored. The undue influence of research funders should be mitigated through their direct involvement in the prioritization process and incentives to ensure that they align their research funding with the national priorities. These efforts would strengthen meaningful stakeholder engagement in health research prioritization within Zambia and other similar contexts