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 2022-2023 PRES Executive Summary highlighted that 87% of participants agreed that they had been kept updated about the research, and 87% said yes to knowing how they will receive the results of the research.
  • Locally, this compares to 67.8% of participants who said they had been kept updated about the research and 69.5% of participants who said they knew how they would receive the results of the research (NIHR TVSM CRN PRES 2022/2023 Report).
  • Participants reported that knowing when the research will be published and more information on the study findings could 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 of 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:

You can also ask patient and public involvement (PPI) contributors to review lay summaries. The Engage group (PPI group at the NIHR Oxford Health Clinical Research Facility) 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:

For studies that are open for a long time, interim lay summaries should be prepared, if possible, at key timepoints in order 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:

The Knowledge Mobilisation Alliance

RECAP project

The Respect Study

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.

NIHR logo

 

Page last reviewed: 3 October, 2024