Earlier this year, Thinks Insight & Strategy was commissioned by NHS England and the Department of Health and Social Care to lead a national public engagement programme focused on public trust in health and social care data use.
The latest phase of the programme explored the current opt-out landscape, and involved over 2,000 members of the public and focused on the choices people have on how their data is used. Through a combination of in-depth deliberation, inclusive engagement, and national survey work, the report provides valuable insights into public expectations for how health data should be used in future.
You can read the executive summary and full report here: National engagement on data: cohort 3 report – NHS Transformation Directorate
Key recommendations include:
- Maintaining an opt-out system rather than switching to opt-in.
- Removing the ability to opt out of data used for NHS planning, while ensuring robust safeguards.
- Preserving the right to opt out of data used for research, especially when private companies are involved.
- Creating a unified, user-friendly opt-out process with tailored options.
- Increasing public awareness of data use, safeguards, and the benefits to care and research.
