Background: Consumer and community involvement (CCI) in health research is increasingly recognised as best practice and is closely linked with calls for epistemic justice and more transparent university collaborations with consumers. Given doctoral candidates play a key role in the future of co-production, examination of consumer partnerships in PhDs is important. This study aimed to describe and evaluate consumer partnerships in a PhD from the perspective of the consumer co-researchers, the PhD candidate, and the academic supervisors including optimal approaches, impacts, and benefits and challenges.
Methods: This prospective, co-produced ethnographic study was conducted over 33 months. Data collection included field notes, a monthly online log of partnership experiences and time spent, interviews or a focus group every six months, and a PhD student reflexive diary. Qualitative data were analysed using reflexive thematic analysis.
Results: The student, two academics, and four consumer co-researchers were involved. A mean of 11.10 h per month were spent on CCI. The student spent the most time (mean 15.86 h per month). Preparation for dissemination of findings was the most frequent partnership activity. The two overarching themes emphasised that a PhD promotes a rich partnership ethos with the student at the centre and that the partnership was a worthwhile but challenging process. The four sub-themes highlighted that developing a collegial and supportive environment with regular meetings combined with a multi-faceted and responsive co-learning approach were core to success. Additionally, there were benefits for individuals, research processes and outcomes, and for driving change in consumer-academic research partnerships. Recruiting to and forming the partnership, maintaining the collaboration through inevitable changes and challenges, and an ethical and supportive closure of the research team were critical.
Conclusions: This longitudinal ethnographic study demonstrated that doctoral research can create a rich ethos for research and knowledge co-production which evolved over time. Equalising power dynamics through relationship building and co-learning was critical. Additionally, a focus on supportively ending the partnership was essential, and CCI may reduce PhD student isolation and procrastination. Enhanced university incentivisation of co-production in health research is recommended to address gaps in consumer remuneration and student support.
Keywords: Co-production; Consumer and community involvement; Doctoral research; Epistemic justice; Patient and public involvement; Qualitative.
Partnering with people who use health services, their families, and the community (consumers) to do research is ethically the right thing to do and leads to better research. Unfortunately, it often does not happen, and researchers are not sure how to do it. To change this, we want researchers to partner with consumers early in their research career, when they are doing a PhD. However, there is limited evidence about this topic. This study described and evaluated a partnership from the viewpoints of the PhD student, the university supervisors (academics), and the consumer co-researchers over 33 months. We found that the whole team learned and grew together, and that the longer-term learning environment of a PhD helped foster a more equal partnership. The partnership was enjoyable and provided many benefits to those involved and to the studies. Much time was spent sharing research in ways that were better for consumers such as social media, newsletters, and presentations. At the start of the partnership, it was important to set up the team for success and there were many challenges along the way which needed flexibility. It was important to prepare for the ending of the PhD so that everyone felt supported to move on. Two big challenges were that the university did not have resources such as templates or courses to help the student learn about partnerships and did not have dedicated funding to pay the consumers for their time.
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