Alongside other changes in clinical trials regulations, from 28 April 2026, sponsors of clinical trials of investigational medicinal products (CTIMPs) are legally required to offer a lay summary of results to those who took part in the trial or, where any participants lack sufficient mental capacity at the time results are shared, other relevant people. For example:
- the person who provided consent on their behalf, such as a parent on behalf of their child
- someone responsible for the participants’ care or welfare, such as a legal representative or next of kin.
The lay summary should be offered within 12 months of the end of the trial. The only exception will be if sponsors have a deferral or waiver in place.
Clive Collett, Head of Policy and Engagement, said:
‘Greater transparency helps earn people’s trust in research, leading to more people taking part in clinical trials and participants feeling more valued.’
One way research teams can prepare for this change is to involve relevant people early in the design of the study. This means involving patients, service users, carers, other advocates or members of the public. Engaging with the relevant people early will help to:
- decide how best to share findings with participants
- ensure participant information is clear – and sets out how results will be offered
- design lay summaries that are understandable to the people receiving them
Applications for research ethics approval need to include detailed information about how the results will be offered. And Research Ethics Committees want to know how you are working with the public in your research, because good public involvement is likely to address issues which are relevant to their review.
We've recently published our latest research transparency data, which gives a full picture of compliance with policy requirements and expectations on registering research on a public registry, publishing results and sharing a lay summary of results with participants.
Information on sharing results of research covers data from clinical trials in the UK that completed in 2023. We measure compliance via a final report, which sponsors are required to submit to us within 12 months of their trial ending.
52% of trials told us they shared or are in the process of sharing their results with participants. 24% told us they did not share their results and results are unknown for 24% of trials, as they didn't submit a final report. Read our latest story for the full data set.
On the occasion of their 20th birthday, NIHR have reaffirmed their ongoing deep commitment to public partnerships.
A 5 point action plan sets out how the NIHR Coordinating Centre (NIHRCC) will work towards their strategic commitments in the 2026/27 financial year.
- Embed research inclusion
- Strengthen partnerships
- Improve reward and recognition
- Require feedback
- Strengthen capacity and capability
For information or queries about public partnerships in NIHR, please email This email address is being protected from spambots. You need JavaScript enabled to view it..
The James Lind Library is a website documenting the development of the fair tests of medical treatments.
The library is building a new section on patient and public involvement and engagement.
They are looking to receive records and primary sources to help tell the story of people and communities shaping health research.
James Lind Library are looking to receive:
- historical examples of patients influencing research
- records and primary sources
- articles and essays
The new section will sit alongside sections on systematic reviews, research reporting, and the use of evidence. It will help document the history of people and communities shaping research, and will be honest about the complexity and challenges.
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