Participatory Approaches to Qualitative Research
Introduction
We are working hard with a group of people with incredible experience in Patient, Public and Clinician Involvement in Research (PPCI). We have people with have experience bringing their lived expertise as patients or care partners to research projects, as well as professional experts in participatory research and qualitative research to build the evidence base for participatory research methods.
This study is funded by a Patient Centered Outcomes Research Institute (PCORI) award (SOE-2023C3-35572)
Building PPCI Toolkits for Qualitative Research
Together, this group is coming together using consensus methodology to develop a set of detailed, plain language toolkits to support two types engagement in qualitative research studies, across the life of projects, from inception through dissemination.
Collaborative PPCI – operationalize through a new approach to participatory qualitative research we developed called the Participatory Approach to QUalitative Research.
Consultative PPCI – operationalized through Community Advisory Boards (CAB).
Conducting the First Ever RCT of PPCI Approaches
Then, we will conduct a randomized trial. The goal of this trial is to compare two types of PPCI in qualitative research: Consultative PPCI and Collaborative PPCI. This is the first ever randomized controlled trial of engagement approaches, and we are so excited to be building the evidence base.
We firmly believe that involving patients, care partners and clinicians in research increases the rigor, validity and meaningfulness of research.
We will compare these methods of PPI in a randomized clinical trial (RCT) in which PPCI participants engaged with research teams on one of three real qualitative research interview studies addressing topics: 1) pediatric mental health, 2) cancer screening and 3) serious illness. Qualitative interviews are conversations with people about their experiences and perspectives. In all three qualitative studies, our PPCI participants will help us at every stage of the research, from design through dissemination.
We do not know about any quantitative (numbers) evidence from RCTs about how well different PPCI approaches work. As far as we know this is the first RCT of PPCI approaches. Given this gap in our knowledge, our research question is:
How does a Consultative PPCI approach to involvement in research compare to a Collaborative PPCI approach in increasing engagement and partnership trust in research, particularly among historically underrepresented groups?
Our best guess (hypothesis), considering the information we have, is that Collaborative PPCI will increase PPCI participant engagement and trust more than Consultative PPCI.
PTA in The BMJ
The PAQ project grew out of our teams’ development of development of Practical Thematic Analysis (PTA), which we described in the BMJ in 2023.
PTA is a simple participatory approach to qualitative analysis designed for health services research teams. The hallmark of PTA is the Thematic Analysis Session, wherein teams systematically break down and reassemble thematic ideas, infusing them with patient, care partner or clinician perspectives.
In PAQ, we have taken the Thematic Analysis Session approach and we are extending it to all of qualitative research, from inception through dissemination. In PAQ, these sessions are called Idea Coproduction Sessions (ICS), and we use them to develop PPCI-infused ideas at various stages in the qualitative research process, including: design, data collection, data analysis, and dissemination.
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