For all the rapid and impressive progress within public health research, there is one important area that has been much slower to develop.
This is the idea of scientists consulting with the very people likely to be impacted by their research—sometimes called “community engagement” or “stakeholder engagement.” While there is a growing literature on the issue, it is often loosely interpreted, and sometimes carried out as an afterthought once the outcomes have been identified.
Yet we have a greater understanding today of the need to work alongside target communities, and other relevant groups, not only to improve the relevance of the research question to them, but also to enhance mutual understanding between researchers and the various stakeholders.
The research community is recognizing that engagement—with the public as well as policymakers, officials and health administrators - is more important now than ever before to ensure that research is not simply imposed upon people but actually meets their needs. And this is even more important where individual consent is not possible, such as when research involves new and emerging technologies like genetic tools for malaria control in Africa.
Existing literature sets out the importance of stakeholder engagement but often in the context of comparing different health interventions, or in the field of HIV-AIDS. The reasons behind such engagement are often not clearly articulated, and, while various frameworks and principles for stakeholder engagement have been developed, there has been little to date that offers insights into how best to conduct it in practical terms.
But a new paper offers some guidance, and is a welcome addition to this largely ignored but hugely important aspect of research.
The paper, published last month in PLOS, makes important recommendations for carrying out stakeholder engagement when developing community-wide methods to control disease-carrying mosquitoes, which focus on the value of engaging directly with affected communities.
I hope that these recommendations will be picked up and be mainstreamed, not only by those working in this area, but more broadly by public health researchers, especially when developing and implementing new public health technologies. However, this is just the start; the recommendations raise further questions that we must resolve to be most effective.
Firstly, the authors recommend dedicated teams with specific expertise to bridge the gap between the research team and the stakeholders. This approach makes a lot of sense and must be explored further.
But it raises a number of issues related to capacities, expertise and time resources. Meeting this recommendation calls for the hiring of professionals to provide this specialisation, which includes social work, consensus building, and conflict resolution amongst others, and which may not be easy to come by. Initiatives such as Mesh, an online platform hosted by the Wellcome Trust to link community engagement practitioners, could be one way to build such a community of experts.
It also raises the question as to whether research teams are sufficiently motivated to invest time and resources to learn how to engage with these experts and get the most out of the engagement process. Engaging with young or vulnerable people, for example, in the context of public health research requires an understanding of their context as much as the research itself.
Secondly, there must be a clear agreement between researchers, funding bodies and ethics review committees on the role of stakeholder engagement in the research project.
The true value of stakeholder engagement surely lies in the contribution it can make to the research outcomes but only if researchers are willing and able to alter the course of their work according to feedback from stakeholders, if funders are willing to provide extra funding or time if necessary, and if ethics committees are willing and able to provide nimble and flexible advice on projects that may change course as a result.
The microbicides trials network, which collaborates over clinical trials worldwide to prevent the sexual transmission of HIV, is a good example of meaningful community engagement. A community working group involving members of the community advisory board, civil society, and community liaison officers offers feedback on the research related activities, including protocol development at all stages. In turn, the research network supports the development of capacity of the community working group and through them the capacity of the communities to understand the disease and the research process.
Finally, stakeholder engagement comes with risks, and must undergo a careful risk-benefit assessment before any research activities get under way.
For example, stakeholder engagement should surely involve everyone, including the most vulnerable. But we also have a duty to ensure the most vulnerable are not made more so through the very process of engagement or through the research, by surfacing latent social or cultural tensions. Any specialist engagement team, then, would need to be able to carry out such an assessment of the various stakeholders, their needs and their sensitivities to be properly able to mitigate any risks.
I fully welcome this new paper as an important contribution to the growing literature on stakeholder engagement.
We now need a conversation about clarifying the terminology and the methodology, and how best to train and develop this expertise for better and more informed public health research.