Earlier this year, NHS England and the Department of Health and Social Care commissioned Thinks Insight & Strategy to lead a national public engagement programme focused on building trust in how health and social care data is used. Public engagement is a vital part of digital transformation—it ensures that policies and services reflect real public concerns and values.
In previous phases, the programme explored how data is accessed and used (Cohort 1), and the implications of a single patient record and GP data use beyond individual care (Cohort 2). Cohort 3 focused on the complex landscape of data opt-outs.
As the ways health and social care data are used continue to evolve—from improving care and planning services to supporting research—this phase asked a central question:
What choices should people have about how their health and social care data is used?
Through a combination of in-depth deliberation like interviews, as well as national survey work, it involved over 2,000 members of the public and focused on the choices people have on how their data is used.
Key recommendations include:
- An effective opt out system must balance the need for choice with the need for data to be used for the greater good.
- Removing the ability to opt out of data used for NHS planning, while ensuring robust safeguards. Participants felt the definition of planning and improving services need to be clear so that their data would be used for the greater good, with direct benefit for the NHS, and used by the NHS or with NHS oversight.
- Ensure people can opt out of data being used for research, especially when private companies are involved.
- Creating a unified, user-friendly opt-out process with tailored options. Participants emphasised the need for a single ‘touchpoint’ when choosing how your health and care data is used. They wanted to change from the current system of opt outs in multiple places and having to make multiple decisions. People should also be reminded of their opt out status.
- Increase awareness of both the possibility to opt out and the safeguards in place, as well as of why secondary data use is important and valuable.