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.

Planning ahead to communicate your research findings
“The UK Policy Framework for Health and Social Care Research says: Information about the findings of the research should be available, in a suitable format and timely manner, to those who took part in it, unless otherwise justified” (HRA online, accessed: 2026) and in response they have developed an additional guidance on communicating findings Informing participants – Health Research Authority.
This includes guidance on:
  • adding dissemination plans in Participant Information sheets
  • adding dissemination plans in Protocols
  • the considerations for funding dissemination plans
  • the responsibility of researchers when communicating results
  • the effective methods to communicate results and what needs to be considered
  • other useful resources.
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: 

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

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: 

  • The NIHR run “Writing for the Public” workshops can be found on NIHR Learn: NIHR Learn 

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 

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 also referred to by NIHR and HRA can be found below: 

The Knowledge Mobilisation Alliance 

RECAP project 

The Respect Study 

Frequency and format of clinical trial results dissemination 

Further examples of good practice: Informing participants – Health Research Authority

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: 28 October, 2026