Participatory Research
Hello, and welcome to this bite-sized training on Participatory Research. We’ll look at how the research process itself can be opened up to become “participatory”, right through from the design stage to the dissemination of results. We’ll discuss what this means for participants and how participatory research relates to a growing mandate from research funders around Responsible Research and Innovation.
Expanding what it means to “participate” in research
“Participation” in research typically means being a source of data, perhaps gathered via interviews or through interaction with a pre-existing experimental setup.Traditionally, research participants are “human subjects” whose interviews, personal details or test responses provide the project’s primary data. However, active participation can be invited in just about any — or, potentially, every — phase of research, including research design. This can change the dynamic from research “about” a group of human subjects, to research “with” active participants, who become co-investigators, collaborators or correspondents, rather than just data sources.
Opening up the research process
Discourse around open research often considers the outputs — which are made available as “open access” — or inputs — which are made available as “open data”. Here, instead, we’ll talk about opening up the research process, inviting people to engage with and potentially shape this process as it develops. It’s worth mentioning that there are also ways to open up a research process that don’t involve inviting participation — such as publishing your research protocol so that others can reproduce your research — and that topic will be discussed in a separate video. Participatory research tends more in the direction of “robustness” than “reproducibility”, and can help to ensure that the research is actually fit for purpose. Funders may want to see plans about how a research project will meaningfully involve stakeholders. This may be referred to as ‘co-production’, ‘co-creation’, or ‘co-design’ — or Responsible Research and Innovation.
Logic of participation
If this is new to you, the idea of opening up a research process to participation may sound strange. Traditionally, the design, oversight, and administration of a research process have primarily been carried out by experts, with participants taking on the role of data sources. However, expertise and participation are not actually at odds. In medicine, for instance, there is a well-established and exemplary form of participatory research in the sense that we have been talking about, namely public and patient involvement or PPI. PPI is a research practice wherein people with health conditions, carers and members of the public work together with researchers, and influence what is researched and how. The balance of involvement in PPI can range from ‘consultation’ to ‘patient-led research’. One study found that around 45% of recent papers in the general health-research journal BMJ Open contain PPI.
Here’s an example that illustrates how this kind of project can work. The Maternal health And Maternal Morbidity in Ireland (MAMMI) study recruited 3047 women as participants, following their initial visit to a maternity hospital and a subsequent telephone interview. The project ran from 2012 to 2017. Participants co-created a set of resources about women’s health after motherhood, suggested several follow-up studies, and co-presented and co-published findings. The year after the project, a public contributor panel was convened — running quarterly on Saturday mornings — in which 88 of the study participants took part in discussions about what further related research they would like to see funded.
The principal investigator, Dr Deirdre Daly, reflects that “To be successful, public involvement ought to be planned as a core essential component of the study’s design” and that the process must be “cultivated in order to achieve true partnership.” These points would apply across domains, though of course different research topics would come with different requirements for participants (such as demography, expertise, time available, and so on). Participation can, accordingly, be structured in different ways, ranging from traditional data-gathering methods (like interviews and surveys) to more-involving forms of engagement (such as activity-based workshops, possibly including training for participants, and so on).
Benefits of participation
We can probably all agree that “survey fatigue” is real. If we’re going to take time to answer someone’s questions, we want to know that our contribution will actually impact matters we care about. Simply inviting people to participate in your research often won’t be enough to spark their interest, unless you make the benefits for them clear. In the example of the MAMMI study, the women involved had all recently given birth and their participation reflected that direct lived experience; moveover, they were motivated by the opportunity to have two-way information exchange about topics of concern with the study team. While some benefits may only appear at the end of the project, meaningful participation in a research project can potentially be its own benefit, providing upskilling opportunities and camaraderie, along with all the other things that make work in research interesting and enjoyable.
Requirements around Responsible Research and Innovation
EPSRC now requires a statement on Responsible Research and Innovation (RRI) to be included in submissions proposals. They offer the acronym “AREA”, for “anticipate, reflect, engage, and act” as a framework for RRI. Whether we refer to engagement, inclusion, or participation, a key part of being a responsible researcher is to
Open up ... visions, impacts and questioning to broader deliberation, dialogue, engagement and debate in an inclusive way.
This process can end up opening up possible futures that the researcher wouldn’t have anticipated on their own; this illustrates why opening up the research process can constitute such a vital aspect of “open research”.
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https://www.youtube.com/watch?v=7r9IYl4CtKI
https://www.brookes.ac.uk/sites/research-support/pen/training-and-support