# Co-production in HIV research: a case study from the COVID-19 pandemic

## TL;DR

This study explores how people living with HIV can co-produce research with academics, focusing on their experiences during the pandemic and offering lessons for future projects.

## Contribution

The paper provides practical insights and recommendations for conducting remote co-produced research with people living with HIV during a global crisis.

## Key findings

- Building trust and managing expectations is crucial for successful co-produced research.
- Remote co-production is feasible with strong communication and adaptability.
- Positive experiences in co-produced research may encourage future participation in research initiatives.

## Abstract

Co-produced research is an approach where people with lived experience voluntarily engage as collaborators throughout the entire research process. In this study, academic researchers aimed to recruit and train people living with HIV, in partnership with a community-based organisation (Positively UK), with the objective of enhancing research skills and capabilities of the HIV community to lead and/or facilitate forthcoming research initiatives and projects.

Our collaborative endeavour involved a group of academic researchers, a public involvement practitioner and people living with HIV (comprising two co-researchers and three advisory group members) to design and conduct a participatory, qualitative enquiry from January to September 2021. Our study aimed to explore the experiences of people living with HIV within the United Kingdom during the COVID-19 pandemic. All co-researchers underwent rigorous and essential research training that encompassed ethics, conducting qualitative interviews, analysing transcripts and considerations pertaining to emotional well-being. Communication was conducted exclusively by phone or online throughout the project. The unpredictability associated with the pandemic necessitated an adaptive and flexible approach that encompassed personal circumstances and the intricacies of conducting research during a global health crisis. Based on our reflections, we map out our collaborative experiences and provide recommendations for the advancement of future co-produced research endeavours involving people living with HIV at each stage of the research cycle. We identify four areas of focus: (1) building relationships inclusive of trust and rapport and managing stakeholders’ expectations; (2) reciprocal learning and ensuring the amplification of all voices; (3) the necessity for flexibility and the integration of continuous reflection; and (4) the pursuit of impact that transcends traditional academic outputs.

Participatory research and co-production are increasingly common approaches to research. These approaches have impacts on all stakeholders involved including co-researchers, public involvement practitioners, academic researchers and the wider community. In the context of this study, we demonstrate that undertaking co-production remotely and building meaningful partnerships remains possible where teams build good rapport challenging traditional power structures. The team members affirmative experiences could potentially positively affect their future participation in research, whether as participants and/or as co-researchers, as well as informing the future research strategies and decisions of researcher investigators.

Co-production is when people with lived experience are involved in research in an equal way with researchers. In this co-produced project, we worked collaboratively as a university and charity to train a group of people living with HIV to carry out and analyse interviews in research. Our study looked at the experiences of the COVID-19 (coronavirus) pandemic among people living with HIV in the UK. Experiences were captured through interviewing people either online or by phone between January and September 2021. Conducting a co-produced research project with people living with HIV during a pandemic presented unique and unexpected challenges, which required transparency and continuously adapting to the situation. In this paper, we reflect on what we learned by working together and share recommendations for future co-produced HIV research.

We found four areas which are important:

(1) building relationships and managing expectations,

(2) joint learning and ensuring that everyone is heard,

(3) being flexible and constantly reflecting,

(4) having an impact outside of the academic world.

We know that participatory and co-production approaches are becoming more popular forms of research. They give greater possibility to benefit the people involved and the wider community. We found that it is still possible to build meaningful relationships when running a co-production project remotely. We also think that deciding to take part in future research as a participant and/or co-researcher may be influenced by having a positive experience in a co-produced research study.