Building public trust in health data: co‑designing a social licence for Kent and Medway

Summary

We worked with NHS Kent and Medway to co-design a social licence for the use of health and care data. The social licence is a clear, community shaped commitment that sets out how data should be used across the Integrated Care System (ICS).

Through deliberative engagement, co-design and partnership working with voluntary, community and social enterprise organisations (VSCE), we established the Kent and Medway Digital and Data Involvement Group, bringing together diverse voices from across the region. This work led to the publication of “Our Data, For Our Good”, an insight driven, co designed commitment that reflects the real needs and concerns of local people.

The programme has strengthened public trust, supported more transparent decision making and enabled the system to use data responsibly as part of its digital transformation.

Challenge

NHS England continues to widen its use of health and care data to improve services, develop new insights and support digital transformation. As data use increases, it is essential that communities have a meaningful say in how their data is used.

Public trust in health data can take a long time to build, but can be lost quickly if people feel excluded from decisions. NHS Kent and Medway needed a clear, co‑designed commitment to responsible data use that reflected the concerns and expectations of its diverse population, while also meeting its legal duty to involve the public. Without shared principles, there was a risk of misunderstanding, increased data opt‑outs and reduced confidence in digital and data‑driven programmes.

Our approach

Health Innovation KSS was commissioned by NHS Kent and Medway and NHS South, Central and West (SCW) Commissioning Support Unit to co-design principles for how health and care data is used across the Kent and Medway ICS.

We led a programme of deliberative engagement, co production and partnership working, with insight, lived experience and inclusion at its core. The programme enabled people and communities to work directly with system leaders to shape decisions about how health and care data is used.

This included:

• recruiting, training and supporting Digital Citizens and establishing the Kent and Medway Digital and Data Involvement Group, bringing together people with lived experience of physical and mental health conditions, carers, people from global majority communities, people with lower digital confidence, non English speakers and those with significant digital expertise
• delivering co-design workshops with diverse community groups, Voluntary, Community and Social Enterprise (VCSE) and Integrated Care System digital and data leaders, enabling joint, trust based discussions about data use
• working in partnership with organisations including Healthwatch Kent, Healthwatch Medway, Social Enterprise Kent, Rethink MIND, the Nigerian Association and Youth Ngage Kent to ensure inclusive and representative participation
• conducting an insight review, a public survey and targeted engagement with marginalised communities

Training and ongoing support were provided throughout so participants could contribute confidently and meaningfully, regardless of prior digital or technical knowledge.

Impact

Health and care system impact

The publication of “Our Data, For Our Good” established a co‑designed, insight‑driven commitment to how data is used across Kent and Medway.

The Kent, Medway and Sussex Secure Data Environment (SDE) became the first programme in the national SDE network to scale and embed a social licence model. This project has supported more collaborative engagement across the Kent, Surrey and Sussex region on digital, data and artificial intelligence (AI). The approach developed through “Our Data, For Our Good” informed subsequent deliberative engagement on data opt-out and financial transparency, helping to create shared communication resources across Kent, Medway and Sussex.

Catherine Dampney, Director of Innovation & Transformation at NHS South Central and West Commissioning Support Unit; Programme Director for NHS Kent, Medway and Sussex Secure Data Environment –

“The work that the Health Innovation Kent Surrey Sussex have led on for patient, and public involvement and engagement has been invaluable for the Kent, Medway and Sussex Secure Data Environment in allowing us to have a robust and meaningful involvement mechanisms across all our diverse communities as well as embedding public representation within our core governance.”

Patient impact

• 50 patients and members of the public and six VCSEs were directly involved in the co‑design process, ensuring that a wide range of lived experiences shaped the principles.
• The project has strengthened public trust and supported more transparent, responsible use of health and care data.
• People and communities shaped the principles that underpin this commitment, consistently highlighting the importance of honesty, clarity, privacy, choice and fairness.
• Training and support enabled participants to contribute confidently regardless of prior digital or technical knowledge, ensuring their concerns were directly reflected in system-level decisions.

Michelle Gardener, chair of the digital and data involvement group –

“It is significant that our communities have co-designed the principles. A social licence lays the foundation for trust and confidence in how data is handled and used. That means these principles must go beyond light-touch definitions on a page and directly shape how the system acts in practice; ensuring people are actively informed, respected and given clear information around their rights and choices.”

Spread and scalability

Through the Kent, Medway and Sussex SDE, the social licence approach has been adopted in NHS Kent and Medway and is informing wider practice within the national SDE network. The approach builds on earlier work undertaken with NHS Sussex.

Methodology and learning from the project have been shared with Working with People and Communities (WWPC) leads across digital and data programmes in England, supporting wider adoption.

The continued involvement of the Digital and Data Involvement Group is enabling the approach to be adapted for emerging priorities, including the co‑design of principles for the use of AI in healthcare.

Find out more

To learn more about ‘Our Data, For Our Good’ and the Kent and Medway social licence for health data, visit the NHS Kent and Medway ICB website or contact Isabel Clark at Health Innovation KSS.