| Literature DB >> 30460042 |
Abstract
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.Entities:
Keywords: Health research priority setting; Low income countries; Stakeholder involvement; Zambia
Year: 2018 PMID: 30460042 PMCID: PMC6234591 DOI: 10.1186/s40900-018-0121-3
Source DB: PubMed Journal: Res Involv Engagem ISSN: 2056-7529
What do the common approaches to health research prioritization say about stakeholder engagement?
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| The Essential National Health Research Strategy (ENHRS) | Categories of stakeholders identified include; researchers, decision makers, health service providers and communities. |
| The Combined Approach Matrix (CAM) | Participants include: individuals, households and community; health ministry and other health institutions; other sectors apart from health; and macroeconomic level actors. |
| Child Health and Nutrition Research Initiative (CHNRI) Framework | Specifically identifies various key stakeholders: PS framework managers or initiators, a group of experts, called in some cases a Technical Working Group (TWG) and a Larger Reference Group (LRG)—featuring wide stakeholder representation—to assess the importance of the criteria. |
| The James Lind Alliance (JLA) PS Framework | Identifies a priority setting partnership/ steering group which includes: Patients affected by the disease/condition/treatment need; care givers assisting those suffering from the disease or condition; and clinicians. |
| Listening for Direction (L4D) Framework | Describes several stakeholders: A group of experts who determine the “desired mix of key stakeholders” who should participate in the initial consultation--- mostly decision-makers. |
Ref: [5–9]
Benefits of public engagement in health research priority setting with illustrative quotes
| Reason | Quote |
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| Increased chances of identifying research topics relevant to society | “…I believe that research should be relevant to the needs of society. Yeah. So those are the main ones, because you do research for them.” [#7] |
| Increased chances of success | “Ensuring that you have incorporated the views of the various important stakeholders. And in this case the key stakeholders are usually the… are usually the people on the ground - the communities, the civil society. And… and if you can engage them in identifying what priorities you should be looking at, then you are successful.” [#9] |
| To gain an ethical perspective | “The community leaders will basically bring in the ethical perspective.” [#3] |
| To prevent future disagreements | “…So public should feel they participate because when you set priorities as government and they come out as a priority, the public starts arguing that no these are not. It distorts your planning. There’s always this tug of war with the people you feel … So they should be involved that’s what I’m saying…”[#2] |
| Identify topics that respond to community experiences | “I think communities, participants need to have a say in research priority setting because they are the ones that experience whatever problems they have so they need to have a say.” [#27] |