Informing research participants of study progress and results
“Research is of no use unless it gets to the people who need to use it.” – Professor Chris Whitty, Chief Medical Advisor to the UK government.
This toolkit is for researchers of Oxford Health sponsored studies.
Many research participants have highlighted the importance of keeping participants updated with a study’s progress and results.
- The NIHR’s 2024-2025 Participant in Research Experience Survey (PRES) results highlighted: “One area that needs improvement is helping people understand how to get the results of a research study with 23% of adults and 20% of young people feeling that they did not know how to do this. Some people also felt they were not kept updated during a study, with 29% of adults and 24% of children and young people feeling they did not get enough updates from the study team”. (accessed 11/08/2026 Participant in Research Experience Survey (PRES) | NIHR)
- Locally, our participants are feeling better informed about their study progress compared to national average but remain unsure about how to access their study results (NIHR PRES South Central Final report 2024-2025).
- Participants have previously reported that knowing when the research will be published and more information on the study findings could both improve their experiences of research. This page suggests ways that researchers can keep participants informed.
This toolkit includes internal resources and publicly available external resources, which have been included with the organisations’ approvals. We hope they will be helpful.
Updating participants throughout the study
The NIHR has guidance on keeping in touch with participants about research studies. This includes suggestions for feedback events, webinars, results posters and social media: How to keep in touch with participants about your study.
Parkinson’s UK templates are relevant to all researchers and not just Parkinson’s researchers and there is space to add your own logos on all these resources: Staying connected with your participants | Parkinson’s UK (parkinsons.org.uk)
You may find the following aspects of the toolkit particularly helpful:
- A letter template for informing participants about the end of study activity: Last Active Visit Letter Template
- A template for a short update to keep participants informed: Short Updates Template
- A project summary template, to give participants key details such as timelines and contacts: Project Summary Details Notecard Template
- A newsletter template: Newsletter Template
Please note some of this documentation may need approval through your Research Ethics Committee prior to its use on your study and we recommend checking with them first or your local R&D department.
Resources for participants coming to the end of their participation
- Our local co-produced “What’s Next After Taking Part in Research?” leaflet for research supported by OHFT Research & Development Department provides information about support for our research participants as they finish their research involvement. Accessible version of the leaflet available here. Other Trusts and research organisations who wish to reproduce this leaflet should first refer to the Oxford Health NHS Foundation Trust Policy for reusing our leaflet content.
- NIHR Thank you card: NIHR Thank you card.
Writing lay summaries
If you are an Oxford Health researcher and have approval to disseminate your results, you can find guidance and training in writing lay summaries below:
- Health Research Authority: Writing a plain language (lay) summary of your research findings
- NIHR Plain English Summaries guidance: Plain English summaries | NIHR
- The NIHR run “Writing for the Public” workshops can be found on NIHR Learn: NIHR Learn
- The Plain English Campaign: Plain English free guides
You can also ask patient and public involvement (PPI) contributors to review lay summaries. The Engage group (PPI group at the NIHR Clinical Research Facility: Oxford Health) may be able to support with this or signpost you. Please email: oxfordhealth.crf@nhs.net
Sharing lay summaries
It is important to share lay summaries with the study participants. You can also publish lay summaries on:
- Your study website
- Oxford Health Knowledge and Research Archive library: ORKA (beta) – Oxford Health Research & Knowledge Archive. Please email library.enquiries@oxfordhealth.nhs.uk if you would like your summary added to this results archive.
- Health Research Authority (HRA) research summary page by submitting the twelve-month final report Submit your Final Report – Health Research Authority (hra.nhs.uk). To view other summaries, visit HRA – Research Summaries
- Oxford Health’s Research & Development Results Library webpage: Please email research@oxfordhealth.nhs.uk if you would like your summary adding here.
For studies that are open for a long time, interim lay summaries should be prepared, if possible, at key timepoints to keep participants updated on its progress.
Results dissemination and how to feedback your participants
NIHR guidance on the dissemination of research findings can be found here: NIHR How to disseminate your research.
Ideas could include:
- feedback events
- use of social media
- webinars
- posters
Other examples of good research dissemination methods can be found below:
Other examples of good research dissemination methods can be found below:
The Knowledge Mobilisation Alliance
Frequency and format of clinical trial results dissemination
We hope this information is useful to you. If you have any feedback or if you know other useful tools that can be used to disseminate study findings, we would love to hear from you, please contact:
Jemima Littlejohns, OHFT Research Training and Development Manager.
Page last reviewed: 20 August, 2026