We're working on new resources that will make sure that people have a clear understanding of how they can expect to be treated in health and social care research and the safeguards in place to ensure this is the case.
A new advisory group will help shape the development of resources, ensuring they are accessible. We are looking for 3 public contributors, including one person to co-facilitate the group.
Help us spread the word to find the right people for this important project.
We're inviting members of the public to express interest in attending an event on Tuesday 17 November 2026 at Prince Philip House, London.
We're looking to hear from people who:
- have experience of health and social care research, and
- awareness of what helps, and what makes it harder for people to take part in research
Do you know someone who might be interested? We'd be grateful if you could share this opportunity with your networks.
Understanding Patient Data (UPD) is an independent organisation that aims to make the way patient data is used more visible, understandable and trustworthy, for patients, the public and health professionals.
UPD has published their first State of the Nation report. It brings together many sources of evidence to understand public confidence in the use of health data at a time of rapid system change. Key insights from the report include:
- public understanding has not kept pace with the changing health data landscape
- there is no single ‘public’
- opt-out is a behavioural expression of agency rather than outright rejection
The report also sets out factors that consistently emerge as the foundations of public confidence: clear public benefit, trust in those using and managing data, visible governance and accountability, and meaningful public involvement.
Emerging findings show that patient and public involvement and engagement in health data use is widespread but unevenly embedded.
Global charitable foundation Wellcome has published a new equity framework. This aims to advance inclusive practices that broaden the range of people leading, participating in and benefiting from science, making sure that research is informed by people's needs and outputs are more trusted and accessible.
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