How to set up a participatory research agenda
Setting up a participatory research agenda has multiple advantages: apart from helping to identify stakeholders’ unmet needs and what matters to end users, it also helps researchers include new perspectives in research, prepare stakeholders for the research process, structure the process for broader collaboration between stakeholder groups, and enable and empower stakeholders to develop their own voice.
Examples of participatory research agenda setting methodologies
In setting up a participatory research agenda, lessons can be drawn from a few domains, including:
Agricultural development in developing countries: The Centre for Coordination of Agricultural Research and Development for Southern Africa (CCARDESA) organised meetings with different stakeholders to promote innovative participatory research methods that ensure that agricultural research and development agendas respond to the needs of the different stakeholders (farmers, policy makers, decision makers in universities, researchers, students, and so on).
Sustainable development: The Netherland’s Research Programme “Knowledge for Climate” (2008–2014) made co-creation of research questions a fundamental aspect of the programme (see page 10 in the final report).
Health care and promotion: Patients and other stakeholders are engaged in decision making around healthcare research, for example: The James Lind Alliance (JLA) promotes dialogues between patients, healthcare professionals and clinical researchers over the effectiveness and uncertainties of medical interventions and jointly identifies priorities for research (see the methodology in the JLA Guidebook); the Dutch Burns Foundation includes patients in research agenda setting and research implementation by using the Dialogue Model (see next section); and Involve aims to stimulate and support active participation of citizens in medical and health research. Lastly, educational projects, such as Healthy Mind, a project within the Xplore Health programme, identified research topics through workshops with more than a thousand student participants from fifteen pilot secondary schools in Catalonia. Students identified depression and stress as the health problems that concerned them most and collectively built a list of research priorities within those topics.
Others: Science Shops, organised within the Living Knowledge Network, promote participatory research agendas. They have been used in projects such as PERARES or EnRRICH to strengthen public engagement in research by involving researchers and civil society organisations (CSOs) in the formulation of research agendas and the research process. CSOs were invited to formulate questions that have been later selected by an advisory board and distributed among higher education students who could dedicate their masters or degree thesis to working on them.
Using the Dialogue Model
An approach increasingly used to engage patients in health research agenda setting is the Dialogue Model, an operationalization of the Interactive Learning and Action (ILA) approach that was developed for use in the health care domain. This model is an instrument for setting up a research agenda with stakeholders and can be used in any field (note that there are other related methods, such as the Participatory Learning Approach (PLA)).
The following five steps for participatory agenda setting are based on an adaptation of the Dialogue Model:
- Exploration (literature search, document analysis, internet fora, informal conversations with stakeholder representatives)
It is important to conduct a stakeholder analysis to obtain a broad overview of involved stakeholders, paying attention to diversity within the stakeholder groups (gender, age, socioeconomic status, ethnicity, etc.). All relevant stakeholders should be considered for inclusion in the agenda setting process. If a particular type of stakeholder is not included, you should be able to explain your case. It is important to do a stakeholder analysis properly, since it is the essential first step and of decisive importance for the further content of the research agenda.
- Engagement and prioritisation
In this phase important aspects to pay attention to are the creation of good social conditions and respect for experiential knowledge, as well as mutual learning, emergent and flexible research design, and neutral process facilitation. Engagement and prioritisation are really two sub-steps that have diverging and converging functions, respectively. That is, the engagement phase concentrates on mapping the breadth of the stakeholder group and its issues through in-depth interviews and focus groups, while the prioritisation phase concentrates on converging the issues to create an informed focus through the Delphi technique or online questionnaires (e.g., SurveyMonkey, Jotform, Typeform, or Google Forms).
The aim of this phase is to integrate the perspectives of diverse stakeholder groups via dialogue meetings with representatives from all relevant parties in order to develop an integrated agenda. Given the asymmetries between stakeholders (in, for example, knowledge and power), the dialogue should be carefully prepared to give each stakeholder group a ‘say’. Aspects that help create an impartial and meaningful process are ensuring equal numbers of representatives from stakeholder groups, selecting participants with open minds, using nontechnical language, reserving conversation time for stakeholders, assisting stakeholders in advance of the meeting, and obtaining consensus on appropriate times and locations for the dialogue meetings. A rich resource on research integration using dialogue methods can be found here.
The aim of this phase is to develop research based on the integrated research agenda and to keep all groups engaged. Tackling any time frame mismatches between the agenda setting process and the programming phase is crucial here. It really helps if all stakeholders included in the previous phases are also represented in the programming committees.
The ﬁnal phase, implementation of the research programme, can be realised through ‘calls for proposals’, initiated by the research sponsors, or by matching research themes with research groups or stipulating key topics. Including stakeholders in programming committees and scientific advisory boards can help in this phase. The implementation of enduring forms of participation and interaction is a rather big challenge in agenda setting. Since there is an inclination to go back to ‘business as usual’, alertness to this tendency is required.