Since March 2020, the government's COPI notices have required NHS Digital to share confidential patient information with organisations tackling COVID -19. This has brought questions about the role of the public in making decisions about how their data is collected, processed and used into sharp relief. Ada Lovelace's data stewardship report explores some potential governance models which might support greater public involvement and control over how their data is used.
It is in this context that Liverpool City Region has commissioned the University of Liverpool to establish a Civic Data Cooperative (CDC) to hold health and social care, and wider public datasets in trust for the residents of the region.
Involve is working with the University to design an engagement and governance strategy for the CDC.
The project includes desk research to understand the possibilities for governance of data trusts / coops, working with Reema Patel and developing her work for the Ada Lovelace Institute.
We interviewed key stakeholders across the city region about the form of governance the CDC should develop and the role of the public within this, as well as how the public might be involved in decision making once the CDC is operational. We then hosted a stakeholder workshop to test options and to seek to develop a shared understanding of where public engagement could happen, and at what level.
The final recommendations were launched at an event at the Victoria Gallery and Museum in Liverpool.