Co-production around data science and AI could draw meaningful joint ownership

Academic researchers and health professionals based at Imperial College London, including Professor Helen Ward- NIHR Imperial BRC Social, Genetic & Environmental Determinants of Health Theme Lead, alongside 30 public contributors, jointly co-designed a new information resource for patients to learn more about data science and artificial intelligence (AI) in healthcare. Working with public contributors on data science and AI could be challenging due to the complexity of the topic and the common use of jargon. Therefore, the research team decided to evaluate the co-production process and understand the experience of working together and how the project influenced public contributors. The NIHR SPARC award partly funded the evaluation.

Piotr Teodorowski, who led the evaluation, said: “This project showed how creative research methods elicit new ideas and perspectives. Without this novel approach, we would not have been able to capture everyone’s experiences. Thus, we recommend that other researchers and public involvement professionals consider creativity when working with public contributors.”

Researchers used creative methods to elicit experiences from public contributors, researchers and health professionals. Creative methods enabled everyone to reflect on their experiences jointly and to bring various viewpoints together while simultaneously ensuring the shared ownership of the process and outcome.

In stage one, everyone was invited to take part in a photovoice to record their experiences of being involved in the co-production process. Over 60 photos, paintings and poetry were collected, allowing the team to capture individual experiences.

In stage two, these data were used to build a Mandala, a geometric configuration of photos to represent the joint journey. The professional artists supported this stage and drew the illustration of the Mandala. Everyone involved had an opportunity to contribute and the final version of the illustration was agreed.

Each layer of the Mandala presents a unique but also interconnected story (as symbolised by the ships and connections between all six layers). In the middle of the Mandala, there are flowers symbolising growth and transition. The second layer includes the bridge, which signifies the connection between two places and brings the team together through the joint path. The third layer focuses on remote working and shows the zoom screen- the way that almost everyone saw each other during meetings. The fourth layer illustrates the reasoning of the people who joined the project. It consists of an old photo of one of the people with their family member who was diagnosed with sickness. Principles of meaningful public involvement are a core of discussion in layer 5. Here, the box symbolises gaining new knowledge in a supportive environment. The final layer is about ethical principles around data science and AI that need to underpin any project.

The evaluation showed how the project ensured equal power sharing between researchers, health professionals and public contributors. Besides, the project offered inclusive and accessible space to work together with an opportunity for the public contributors to learn new skills. This was emphasised by Reshma, one of the public contributors who was also a co-author of the paper in her reflection:

“I can now help as a patient and public contributor in developing tools and strategies for the dissemination of AI in medicine to others like myself. I am now a part of two steering groups for artificial intelligence in dementia and a PPI member for artificial intelligence in respiratory care in intensive care medicine.”