National Voices reports findings from AI regulation engagement programme

A new report published today by National Voices, Good regulation for AI in healthcare: what people with learning disabilities, carers and young people told us, shares insights from workshops with people with learning disabilities, unpaid carers and young people about the regulation of artificial intelligence (AI) in healthcare. The report forms part of a wider engagement programme led by the National Commission for the Regulation of AI in Healthcare. 

AI has the potential to improve efficiency across the NHS and support a more person-centred experience for patients. However, participants in this research were clear that the adoption of AI cannot come at the expense of patient choice, or equitable access to services. The findings highlight the importance of involving patients, carers and communities in decisions about how AI is developed, regulated and implemented in healthcare. National Voices is calling for patient voice to inform every stage of AI implementation in the NHS, from the development of regulatory frameworks and procurement decisions to monitoring the impact of AI technologies once they are in use. 

Louis Horsley, Research and Insight Manager at National Voices said: 

“National Voices is very grateful for the opportunity to inform the work of the National Commission on the Regulation of Artificial Intelligence in Healthcare.  The equitable and effective roll-out of AI in our healthcare system is essential to ensuring that the NHS works for everyone, and this report provides critical insights into how this could be achieved from the perspective of patient groups and community members who are more at risk of experiencing health inequalities or have more complex needs.” 

We would like to thank the National Commission for the Regulation of AI in Healthcare for commissioning this important work, as well as our partners Carers UK, the Association for Young People’s Health and Learning Disability England for their collaboration on the project.  

Emma Rigby, Chief Executive of Association for Young People’s Health said:  

“We really welcome this report and the work to understand the perspectives of young people on AI regulation and healthcare – it is so often assumed that young people as digital natives are enthusiastic for all things digital.  The reality is much more nuanced and demonstrates young people’s need for clear governance of AI systems in health settings, reassurances around consent and confidentiality as well as testing the inclusivity of AI systems” 

 Gary Bourlet, Membership and Engagement Lead at Learning Disability England said: 

“AI is powerful and if we want people with learning disabilities to really benefit from it and for it to be a tool to help them and their families live good lives then they need to be involved in conversations about it. I am glad to see this report listening to their worries, and the issues that it might bring.” 

Melanie Crew, Research and Policy Manager at Carers UK said:  

“Carers UK was pleased to support this important research led by National Voices. As the use of AI in healthcare increases, it is essential that there is an effective and trusted regulatory approach. Unpaid carers play a vital role in our health and care system, and we are grateful to National Voices for including carers in this research. As we heard from carers, it is clear that they would like AI to support, not replace, professional judgement, with clear accountability and escalation routes if things go wrong.” 

 The full report, Good regulation for AI in healthcare: what people with learning disabilities, carers and young people told us, can be found here.  

For any questions, please reach out to us by emailing info@nationalvoices.org.uk.