Date: 12 March 2018
An Oxfordshire woman has shared her experience as an official ambassador for NHS research after being treated for bowel cancer, joining an NHS genetics research project and taking part in type 1 diabetes studies.
Gaynor Allen, 55, became a Patient Research Ambassador (PRA), where members of the public promote NHS research, after she volunteered to donate blood samples for health research following her bowel cancer diagnosis in August 2016, aged 54.
The Patient Research Ambassador Initiative (PRAI) is run by the National Institute for Health Research (NIHR) and aims to educate and involve the public about the importance of research trials, for example via events and health awareness days.
In November 2017, she was offered the chance to sign up for the 100,000 Genomes Project, an NHS research project in which patients with cancer, rare diseases and their families offer samples to use for medical testing.
Here, Gaynor talks about how she spoke to members of her local Patient Participation Group (PPG) - where patients discuss issues and solutions to these at their local GP practice - about research as part of the initiative:
“Talking to other members of the PPG at my GP Surgery at a recent meeting provided a perfect platform from which to raise awareness of health research with local people. I saw this not only as a chance to spread the word, but also to gauge response and gain a better understanding of the type of research opportunities which may already exist within my local community.
“Speaking in a general capacity as a PRA for the NIHR and, more specifically, as an ambassador for the 100,000 Genomes Project, it was important to prepare my presentation thoroughly. I liaised closely with my contacts at both organisations which proved invaluable in helping me to identify the key points and providing me with appropriate resources. I began by outlining my PRA role and my passion for research. A whistle-stop tour of the studies, in their various forms, in which I have participated followed before I concluded by sharing the benefits of involvement from a personal point of view.
“I was delighted to receive a highly encouraging response and there were very positive outcomes. Posters and leaflets will be displayed in the waiting rooms at the surgery and posted on the practice website with links to further information. Using the slideshow on the surgery screens to highlight patient engagement opportunities will also be investigated.
“Perhaps most encouraging of all was to find that the new clinical lead at my GP Practice, who is also a senior clinical research fellow at the University of Oxford, is planning a forthcoming event at the Surgery, to be open also to patients of neighbouring practices, to raise awareness of research in a GP setting. I am looking forward to working collaboratively with him in the coming months to help bring this event to fruition and develop patient research opportunities in this area of the county.”
Click here to read a full interview with Gaynor about why she became a PRA.
People who are interested in becoming PRAs should get in touch on firstname.lastname@example.org or 01865 227252.
You may also be interested in