CAG 1 July

Empowering Citizens: 99 +1,  My Journey of the OneLondon Citizens’ Summit from 2020 to 2023

Deborah Millington is one of the three citizen representatives on the OneLondon Health Data Strategy programme who work to ensure that the design, delivery and development of the programme is shaped and informed by the views of London citizens. She took part in the original Citizens’ Summit in 2020 and was also part of last summer’s Citizens’ Advisory Group (CAG). As the CAG report is published, she reflects on the role of citizen involvement and participation over the last three years (18 March 2024).

Deborah Millington

In 2020, I was fortunate to be one of 100 Londoners selected to participate in the OneLondon Citizens’ Summit. Little did I know at the time that this experience would not only shape my perspective but also have a lasting impact on healthcare data policies in the city. Fast forward to 2023, and I was invited back, a journey that allowed me to reflect on the progress we’ve made and the importance of citizen participation in shaping our future.

The Inaugural OneLondon Citizens’ Summit (2020)

The OneLondon Citizens’ Summit was a unique gathering that aimed to address the issues surrounding the use of health and social care data. Held in February and March 2020, this event brought together 100 Londoners from diverse backgrounds, each with their own perspective on the matter.

We convened to discuss and deliberate on three critical questions:

How should our health and care data be used?

  • This question delved into the purpose behind collecting and using our data. It prompted us to consider the ethical implications, benefits, and potential drawbacks of data utilisation in healthcare.

Who should have access to our data?

  • Access to health and care data is a sensitive issue. We explored who should be entrusted with this information, emphasising the importance of data security and privacy.

For what purpose should our data be used?

  • Understanding the intended use of our data is crucial. We scrutinized the potential applications, ensuring they aligned with the best interests of London citizens.

Our discussions were rich and insightful. These recommendations weren’t just ideas; they were the collective voice of Londoners, reflecting our expectations and concerns regarding our health and care data.

The Impact and Progress

Fast forward to 2023. I had the privilege of being invited back to the OneLondon Citizens Advisory Group’s inaugural deliberation, this time to pass the baton to the next cohort of 102 citizen representatives who were looking at what criteria should be used when deciding to permit direct access to deidentified data and what criteria should drive decisions about charging. It was a poignant moment, one that allowed me to reflect on the journey we’d undertaken.

One of the most heartening aspects of my return was the realisation that the recommendations we put forward in the inaugural summit had been taken seriously and acted upon. It’s genuinely gratifying to see that the voices of ordinary citizens were not just acknowledged but also instrumental in shaping policy changes. These changes, driven by our collective wisdom, have helped ensure that the use of health and care data in London respects privacy, security, and the greater good.

The Ongoing Importance of Citizen Participation

My experience with the OneLondon Citizens’ Summit has taught me that citizen participation is not only valuable but also essential in shaping our communities and healthcare systems. When citizens come together to discuss complex issues, we bring unique perspectives that often lead to well-rounded and ethical solutions.

As I passed the baton to the next cohort of citizen representatives, I couldn’t help but feel optimistic about the future. I knew they would continue the tradition of fostering meaningful dialogue and advocating for the rights and concerns of Londoners regarding their health and care data.

In conclusion, my journey with the OneLondon Citizens’ Summit from 2020 to 2023 has been both enlightening and inspiring. It serves as a testament to the power of citizen engagement and the positive impact it can have on our society.

You can read the 2023 OneLondon Citizens’ Advisory Group Report here.

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