The next phase is about turning the report’s principles into practical guidance that can support day-to-day decisions about recruitment.
We are working with partners on guidance based around common recruitment scenarios and case studies. This will be developed in stages, starting with priority scenarios where further practical clarification would be most useful.
Over time, it will help show how the rules apply to different approaches, including initial identification and contact by people involved in a patient’s care, sign-up registers, in-system digital or AI-enabled matching, and models involving digital intermediaries.
The guidance will focus on the practical questions organisations need to answer:
- who is accessing health information?
- do they have a legitimate relationship with the patient?
- is information being used within the care environment or shared more widely?
- who can make the first approach?
- what safeguards are needed?
This is becoming increasingly important as Secure Data Environments (SDEs), the Health Data Research Service (HDRS) and other research data infrastructure make it easier to discover cohorts and support recruitment.
We need consistent expectations about how a search can lead to an individual being identified and contacted, and about the legal routes needed where confidential patient information is used.
The aim is to make clearer what good looks like, when a legitimate relationship or consent can support access to confidential patient information, and when another route, including section 251 support where applicable, should be considered.
This also supports our wider aim to make research more inclusive, by helping more people hear about research relevant to them in ways they can understand and trust.
We want the approach to be as consistent as possible across the UK, and will continue working with partners in Northern Ireland, Scotland and Wales as this practical guidance develops.