The importance of bringing lived experience into the development of guidance for AI use in health and care

Summary

The rapid development and use of artificial intelligence (AI) in health and social care raises professional, ethical and legal questions. In February, the Professional Standards Authority for Health and Social Care hosted a participatory workshop in collaboration with academics from the University of Bristol, Dr Helen Smith and Professor Jonathan Ives to explore how we can guide and regulate health and care professionals who use AI.

The workshop brought together professional regulators and Accredited Registers, as well as patients, service users and members of the public. Through group discussions and a series of real-world scenarios, participants explored themes such as AI safety, bias, transparency and accountability.

In this blog, Patrick Murphy, Policy Advisor, reflects on the messages that came out of the workshop.

Content

The value of lived experience

The workshop reinforced a key message, that the future of AI in health and care cannot be shaped by technical expertise alone. Creating spaces where patients and service users work alongside regulators and Accredited Registers supports safer innovation. Lived experience brings vital insight into how systems work in practice, where risks can emerge, what the public want and need from regulation, and how to build trust. It also helps support the safe and reliable integration of AI.

The workshop was designed with participation in mind. Patients and service users took part alongside regulators and accredited registers on an equal footing. In a space that can sometimes feel highly technical, the workshop showed that meaningful public involvement is both possible and necessary.

Participants with lived experience engaged confidently with topics such as assurance, transparency and accountability. Discussions also covered how regulation, standards and guidance are experienced by the people they are meant to serve.

A consistent message throughout the day was that patients and service users are not just observers of AI policy and regulation, they are essential partners in getting it right.

Their contributions raised practical questions and real-world examples, and kept the focus on how AI-enabled decisions can affect people’s lives, access to services and confidence in care.

Equity, transparency and trust

Patients, service users and members of the public highlighted several issues that deserve particular attention as AI becomes more common across health and care.

If engagement only reaches the most confident, connected or well-resourced groups, AI tools and the rules around them risk being shaped by a narrow range of experience. True inclusion means actively involving people who are often overlooked, so innovation serves everyone and not just those who are easiest to reach. To support safe and fair innovation, tackling inequality needs to be built into every stage, from development, to procurement and service design, to long-term monitoring after deployment. Fairness and equity must be central, not an afterthought.

Avoiding harm requires more than technical fixes. It also needs careful scrutiny of the data that feeds AI systems. That includes the data used to train models and the data used in designing health and care services. It is also essential to be clear about which outcomes are being measured and how success is defined.

Trust depends on clarity, and it is important to give consideration to how AI is integrated in health and social care. Patients and service users should not feel like they are interacting with a 'black box'. It should be clear when AI is being used, what role it is playing in someone’s care and what options are available if something feels wrong. Empowering people helps them remain partners in their own health and care journey.

The workshop highlighted challenges but also the opportunities for health and social care improvement presented by AI. As we navigate this technological transformation, patients and service users should remain empowered through co-production, helping to shape the standards, guidance and regulation that govern how AI is designed, deployed and monitored in practice.

To find out more about the workshop and read the report, visit: Artificial intelligence - how to guide and regulate for health and social care professionals using AI

About the Author

Patrick Murphy is a Policy Advisor at Professional Standards Authority for Health and Social Care. Drawing on his background in local government and academia, Patrick is passionate about public protection, equity and system-wide innovation to create and use the best tools to improve care for patients, service users and staff.