Consumers as co-researchers: democratising results

Consumer involvement in health and medical research is increasingly recognised as a vital collaboration for successful and impactful research. The influence that consumers with lived experience of cancer can have on the design, development and conduct of research projects is significant and is building a substantial evidence base. Additionally, there is a role for consumers to be meaningfully involved in the analysis of research results and the dissemination of findings. Consumers engaging in this fundamental aspect of the data collection and analysis process can be considered as co-researchers. A practice of co-research promotes the co-production of knowledge and invites the varied perspectives of a diverse research team to add depth to the interpretation of data, while also assisting with the triangulation of research data.

A study looking at the experience of Arabic-speaking patients with cancer who communicate through an interpreter was piloted at a metropolitan hospital, led by a consumer-led research group (CLRG) and supported by the VCCC Alliance. It aimed to observe specific challenges for cancer patients who communicate through professional interpreters and their ability to communicate what they value with their healthcare professionals (HCPs). The CLRG was comprised of a group of nine consumers with lived experience of cancer, diverse in terms of age, gender, and CALD background. Following their development of the research question, the CLRG engaged a research team that refined the project and finalised the research protocol. An Arabic-speaking researcher was recruited to conduct the research at Western Health, Melbourne. Seven in-depth semi-structured interviews were completed with HCPs, interpreters, and an Arabic-speaking patient who had engaged the interpreting service.

In addition to leading the development of the research question and design of the study, the CLRG can be viewed as co-researchers in this project, through their involvement in all aspects of the research process such as data collection and analysis. As co-researchers, the CLRG contributed a consumer voice to the development of the interview questions for patients, HCPs, and interpreters, and the interpretation and analysis of interview responses. Here, we outline our method of co-research, as well as the key impacts of co-researchers on the outcomes of the study.

Doing co-research: education and active participation

The CLRG worked in conjunction with the research team to develop the project methodology. Semi-structured interviews were planned for interview targets of patients, HCPs and interpreters. The questions for these were developed through an iterative process of drafting and review, with input from the CLRG and research team. Analysis methodology included thematic analysis, a process in which interviews were read and subjected to a preliminary thematic coding by the research team, with the selected sections then presented to the CLRG for further interpretation/clarification. This process allowed for the most impactful involvement and insight of the CLRG as co-researchers without requiring every member of the large team to comb through the extensive interview data.

The CLRG’s involvement in the process of qualitative data analysis (inductive thematic analysis) was a staged process of education and participation. A member of the research team conducted an education session, in which the paradigm, rationale, and approach to qualitative research in this project was introduced to the CLRG. This study utilised a grounded-theory approach (ref), which allows research data to guide an interpretation framework and was endorsed by the CLRG as a method that prioritises participants’ responses as the driver of study outcomes. The CLRG were also educated in inductive thematic analysis techniques, involving close reading of interview transcripts with the aim to co-develop a consensus list of major themes with associated quotes. Educating co-researchers on qualitative research approaches and practices is a critical element of meaningful co-research as it empowers co-researchers to understand the strengths and weaknesses of different approaches and provides the opportunity for critical engagement with the research process and, consequently, the research outcomes.

Following initial thematic analysis, selected interview sections were analysed by the CLRG to shape the final areas of greatest interest and impact for research output. The co-research process was particularly useful for interpreting and understanding the multifaceted and complex insights of patients, HCPs, and interpreters. Complex issues were considered, such as matching the dialect and gender of Arabic-speaking patients who use the interpreting service in oncology consultations. Through discussion, key practical findings emerged from the narratives of interview participants, with valuable and considered input from the co-researchers. The continuation of the co-research process in the dissemination of results, such as through the revision of publications in an iterative drafting process, is essential to both ensuring the quality and validity of published results and to closing the loop with co-researchers.

The activity of the CLRG as co-researchers in the design, collection, analysis, and dissemination of results in this consumer led project facilitated the production of meaningful study outcomes, shaped throughout by the consumer voice.

References:

1. Clark, AT., Ahmed, I., Metzger, S., Walker, E., & Wylie, R. Moving from co-design to co-research: engaging youth participants in guided qualitative inquiry. International Journal of Qualitative Methods. 2022; 21. https://doi.org/10.1177/16094069221084793

2. Lyndon, S., & Edwards, B. Beyond Listening: The value of co-research in the co-construction of narratives. Qualitative Research. 2022; 22(4): 613-631. https://doi.org/10.1177/1468794121999600