Members of the public co-create educational guide demystifying the role of artificial intelligence and data science in healthcare.

Data science and artificial intelligence (AI) are rapidly entering the world of healthcare, something many members of the public find daunting. Kelly Gleason (CRUK Imperial Centre Lead Nurse in Surgery & Cancer) wanted to address this by working alongside the public to create an entry-level resource on the subjects.  

Gleason has helped to involve the public in research for over 13 years; through this she noticed people’s apprehensions around AI and data science. Patients didn’t feel able to make informed decisions about the roles data science and AI played in their healthcare, nor that they could meaningfully inform research in these areas, impacting the translation of that research into treatments and devices used in healthcare.  

When a GP offers a patient with diabetes an app to support their blood sugar control, we want that person to be able to ask the right questions to feel confident using that app. When a researcher asks a group of patients about a new method of diagnosing cancer using AI, we want those patients to feel confident in asking questions and stating concerns that are incorporated in the end product.” - Kelly Gleason

Funding for health-related research almost always requires evidence of patient and public contribution, so it is critical people understand the subjects to have a positive impact on research.

Collaboration is key 

Focus-groups covering existing material on the subjects showed that information made by scientific experts alone was not fit for purpose. The public want to hear from people like them, explaining things in a way that is demystifying and easy to understand. Armed with this insight, Gleason – alongside Jonathan Gregory, an NHS Clinical Entrepreneur, and Dr Matt Williams, Neuro-Oncologist and lead of Imperial’s Computational Oncology Group – set out to co-develop a resource with the public, for the public.   

A group of 20 individuals – 40% male and 60% female, with an age range of 18-75, from Europe, the Caribbean, Asia and Africa – signed up to help co-create the guide. Gleason received a £5,000 grant from the Participatory Research Fund (a strand of Imperial’s Societal Engagement Seed Fund that supports staff who want to engage in research involving public participation).  

“It kickstarted the project,” commented Gleason “we used the grant to pay people for their time, to establish exactly what this resource needed to be to benefit the greatest number of people and get underway with its development.” 

That initial support helped the team seek further investment, resulting in the digital publication of the guide last month, alongside a host of supporting content, including animated videos and podcasts.   

The power of co-creation

While there were challenges working with a large group, Gleason wants to make it clear to researchers considering public participation that it was well worth the effort: “I would do it again in a heartbeat […] having that number of contributors, with the diverse perspectives they brought, gave us an incredibly rich base to build on.” 

Working in this way demonstrated that complex subjects could be addressed through co-production – and were better for it – providing public participants with in-depth knowledge of AI and data science, as well as experience in producing multi-media content, from podcasts and written blogs to videos and infographics.  

Many members of the group, particularly older women, started the experience believing they didn’t have the skills needed to explain the material. But the project helped grow their confidence and they began to see transferable value in the caregiver roles they play in their families, with one participant commenting: “I’ve been explaining things to my children and grandchildren for decades, if I can explain those things to them, I can explain [data science and AI] to them.”  

By sharing their journeys, the process of co-designing the guide shows other members of the public – who might be similarly daunted by the subject matter – that they are equally capable of understanding and taking part in the conversation.

What’s next

Although the guide began to ensure better involvement in research, it soon became clear how useful the information would be to the wider public and to healthcare professionals working to support patients in using new technologies.

Later this year, the NIHR Imperial Biomedical Research Centre will launch a website containing information from the guide, alongside supporting podcasts and videos. Gleason sees the development of the website as the next step in the journey. She’s making sure that the website includes space for feedback, so the content can continue to be improved and support as many people as possible.

• Read the guide: Navigating Digital Health
• Read a blog by Kelly Gleason, with further links to animated video content and podcasts.