Karen Andrews, who is offering a patient perspective to research in the East Midlands

Meet Karen, who is giving research in the East Midlands a patient perspective

Date: 30 January 2019

Meet Karen, who says that her involvement in a research study has changed her life.

Karen, who has suffered with IBS-D (Irritable Bowel Syndrome with Diarrhoea) for over thirty years, got involved with the TRITON pilot study by chance. Sitting next to a doctor at a conference, she spoke about her condition and was referred to Robin Spiller, Professor of Gastroenterology at The University of Nottingham,  who was then in the process of developing the pilot.

After meeting Karen, Professor Spiller asked her to take part in the pilot study, which saw Karen given Ondansetron, and she has continued to take this which she has now been taking for two-and-a-half years.

Researchers are investigating whether the drug, which is commonly prescribed to tackle sickness in cancer patients, can be used to treat the pain and urgent bowel movements experienced by IBS-D patients.

Karen saw immediate results from the pilot and says that the overall effect on her health has been dramatic. “Taking part in the TRITON pilot has transformed my life,” she said. “I’m now able to manage my condition much more effectively and using Ondansetron has meant that I can go out without symptoms and with confidence.”

The TRITON clinical trial - funded by the National Institute for Health Research (NIHR), supported by the Clinical Research Network East Midlands and led by researchers at the University of Nottingham - is investigating whether Ondansetron can tackle an excess of serotonin in the intestines of patients with IBS-D; if so, it could offer an inexpensive way to improve patient treatment. They are also looking at exactly how the drug works by assessing the gut’s sensitivity and patterns of movement in some of the trial patients.

Half of volunteers in the study are prescribed Ondansetron over a twelve-week period, whilst the others are given a placebo. Participants are asked to record their symptoms by keeping a diary, which will be used to assess the effectiveness of the drug.

Karen hopes that other participants see the same benefits as her. Karen’s positive experience as a participant in the pilot and the impact it had on her life led to her joining the study’s steering committee, serving as a patient representative. This and similar patient roles in other research studies are known as ‘Patient & Public Involvement: PPI.’

In her role, Karen has reviewed documents and terminology, offering a perspective from the point of view of a patient and ensuring that communications tied to the study are as accessible as possible. This builds upon Karen’s experience as an active member of the Digestive Diseases Patient Advisory Group at Queen’s Medical Centre, Nottingham.

Karen said: “It’s really important that patients are given a voice in research. I’ve enjoyed having the opportunity to develop the study so that it works effectively for patients, and to make sure that they are given all the information that they need.

“Taking part in research can be quite daunting, so anything we can do to break down barriers for patients is welcome. As someone who has benefitted first-hand from taking part in research, I want to use my experience to encourage others to step forward and see the difference it can have on their lives.”

Click here for more information about the TRITON trial and to find out if you are eligible to take part.

 

  • Summary:
    Find out how one research participant is using her own experience to help make taking part in research even better for others.
  • Include on homepage (one at a time):
  • Areas of the site this news is applicable to:
  • LCRN:
    East Midlands
  • Year of publication:
    2019
  • Specialty:
  • News filter:
    NIHR in your area


You may also be interested in