A moment to say thank you

Research participants are crucial to our research. Their contribution helps researchers draw meaningful results that can benefit patient care.

Thank you for your valuable contribution to research.

All research studies are different. You may have taken part in a clinical trial involving a particular medication or treatment, or an observational study involving questionnaires.

Perhaps you are wondering what happens now that you are coming to the end of your research study.

This leaflet provides information about support for our research participants as they finish their research involvement.

Keeping updated about your research study

Our research team at Oxford Health NHS Foundation Trust https://www.oxfordhealth.nhs.uk/ is involved in several studies.

Most of the studies we run are overseen by central teams of researchers at other organisations such as universities, pharmaceutical companies, or NHS Trusts.

We usually support these organisations by recruiting research participants and carrying out study tasks with these individuals.

There are often many different sites carrying out these tasks.

When enough participants have joined a study or it has come to the end of its planned time, the study will close.

The team overseeing the whole study brings together all the data analysis, draw conclusions, and shares the findings of what they have found in a formal report or medical journal.

Studies often continue for a long time, sometimes several years after a research participant concludes their participation.

The study end date can often change, making it difficult to know when the results will be available.

Much of this process is out of our control and study updates can vary.

However, we want to keep research participants informed about the progress of any study they have been involved in.

Where to check for study updates and results

• First look at your Participant Information Leaflet or study newsletter if you have one. Most studies have a central Trial Office which you can contact, or a website with updates on the study’s progress
• The study team can check if your study was supported by the National Institute for Health and Care Research (NIHR), where a jargon-free results summary may be published on its website https://evidence.nihr.ac.uk/
• Results for a range of studies can be published locally:
• Oxford Health’s Research & Development previous research webpage: https://www.oxfordhealth.nhs.uk/research/themes/research-results-and-keeping-in-touch/previous-research/
• NIHR Oxford Health Clinical Research Facility (OH CRF) website: https://oxfordhealthbrc.nihr.ac.uk/crf/publications/
• Oxford Health NHS Foundation Trust’s website: https://www.oxfordhealth.nhs.uk/news-events/.

For additional ways to check for study updates, visit the ‘How to find updates on your study results’ guide: https://www.oxfordhealth.nhs.uk/research/themes/research-results-and-keeping-in-touch/study-results/.

You can also contact your research team if you are having difficulty finding study updates.

Who to contact after your research participation ends?

If you have questions or concerns when you have finished in your research study, you can contact the following:

Urgent Care

If you feel your care needs are life-threatening, call 999. If your care need is medically urgent but not life-threatening, call 111.

Your Research Team

You can contact one of our research delivery teams, Monday to Friday between 9am and 5pm, if you have a specific question about your participation.

Oxford Health Clinical Research Facility (OH CRF):

oxfordhealth.crf@nhs.net, 01865 902135

Memory & Cognition Research Delivery Team: dementia.research@oxfordhealth.nhs.uk, 01865 902694

Mental Health Research Delivery Team: mentalhealthresearch@oxfordhealth.nhs.uk

Community Research Delivery Team: community.research@oxfordhealth.nhs.uk

Your GP

We encourage you to speak to your GP if your concern is regarding a health issue.

Providing feedback

We welcome and value your feedback, this helps us make improvements.

To provide feedback contact the relevant research delivery team (details on page 6).

Anonymous feedback can be provided at the following:

NIHR Participant in Research Experience Survey (PRES)

The NIHR support our research. The PRES gathers feedback from several research sites, including ours.

Feedback can be provided anonymously, and the NIHR share feedback with us. The research staff will let you know if you are eligible to participate in this survey.

You can complete the survey here:  https://tinyurl.com/tvsmsurvey.

The survey will ask for the study name, the site name and the study ‘IRAS’ number. This should be written on your Participant Information Leaflet. Please ask the research team if you cannot find this information (contact details on page 6).

Participating in future research

You can continue to take part in research:

• Speak to your health professional about research opportunities
• Contact the relevant research delivery team at Oxford Health to find out about our current studies (details on page 6)
• Be Part of Research helps to explain what research is and what taking part might involve. It includes details of local and national research studies and information on how you can take part: https://bepartofresearch.nihr.ac.uk
• Be Part of Research is also available through the NHSApp in England https://www.nhs.uk/nhs-app/. You can learn more about Be Part of Research on the NIHR Youtube channel: https://www.youtube.com/NIHRtv.

Patient and Public Involvement (PPI) in research

It is important that research is done with and by patients, participants, and the public. This helps to shape future research.

• The Engage group (PPI group at NIHR OH CRF) meets every 2 months, either in person or online. Members discuss the ways in which research is carried out at the OH CRF. For more information, please contact crf@nhs.net
• NIHR Research Champions are volunteers who promote health and care research and help staff understand more about the experiences of patients and research participants. You can find out more here: https://www.nihr.ac.uk/researchchampions
• NIHR Oxford Health Biomedical Research Centre (OH BRC) is a partnership between Oxford Health NHS Foundation Trust and the University of Oxford. You can join their PPI group by emailing OHBRC@oxfordhealth.nhs.uk with ‘Register for PPI updates’ in the email subject box
• People in Research website lists local and national opportunities for public involvement in research. You can find out more here: https://www.peopleinresearch.org/.

Thank you for supporting our research

This resource was co-produced with members of NIHR Research Champions and local Patient and Public Involvement and Engagement (PPIE) groups.

We are grateful for the time they have contributed to this project.