- Why did nobody ask us?! Reflections and findings from co-produced research into children’s vaccine uptake.
- Three key takeaways from our participation in the Research Engagement Network (REN) community roadshows
- You and Your Health Data: Results of our Great Exhibition Road Festival activity
- “I sound like Darth Vader and I cough up fur balls” How people living with Airway Stenosis have informed my research career so far.
- How public involvement changed our research question exploring experiences of people with Long Covid
In conversation with: Emma White, Research Technician
Working with: Professor Takats
What did you do?
One of the main pieces of research activity in the group revolves around using Rapid Evaporative Ionisation Mass Spectrometry (REIMS) in the form of the iKnife. This is a surgical diagnostic tool that uses the ‘smoke’ bi-product of surgical diathermy (a widely used alternative to traditional scalpels, where electrically induced heat makes precise cuts to remove unwanted tissue whilst minimising blood loss) for real-time tissue identification.
In recent months we have been lucky enough to work with Kelly Gleason’s Patient Group at Charing Cross Hospital to increase the involvement of patients in this work. So far we have involved the group by asking for their support in grant applications, writing lay summaries and even sitting on the Trial Management Team for a new clinical trial as a patient advisor, leading to success with different funders, including the Cancer Research UK Grand Challenge and the NIHR Invention for Innovation awards.
What were you trying to achieve?
Our medical research relies heavily on patients agreeing to let us collect samples during their cancer surgery. So we need to be able to communicate effectively and sensitively to encourage them to take part. This is much easier to achieve if you involve people who have been in the similar situations and use their unique insight to strengthen research proposals and activities from the start.
Who did you involve and how did you find the right people?
Although the research team had incorporated some PPI in previous work, there was no unified approach, making success difficult to replicate. Because of the diversity of research to be covered, we felt putting together a panel of lay people and patients with different experiences would be most beneficial. We therefore began advertising for members online and through different clinics. However, after we’d been advertising for a while, I met Kelly at a PPI event and we began discussing the possibility of partnering with her very successful existing group who we had worked with on a few individual projects previously.
Were the people you recruited given any training?
Before asking the group to comment on any research activities, we gave a short presentation at one of their committee meetings so we could introduce our work so far. It was a great opportunity to talk through our ideas, and outline what we wanted to achieve. We even gave the members the chance to ‘play surgeon’ in our laboratory. They tested the iKnife on meat samples, which went down very well!
Did you achieve what you set out to do?
Involving patients and the public in our research has helped us to communicate our research to lay people more effectively, and shown us how to convey the most important key messages to patients in a sensitive way. Most importantly, it has given us an insight into a patient’s frame of mind at the difficult time of cancer diagnosis and surgery.
What impact did it have on the people involved?
The research we do will one day have a direct impact on patient care. So understanding how the improvements we are trying to make may affect the patient care pathway, from someone who has been in the same position before, is invaluable. Being involved with the patient group has opened my eyes to aspects of the impact on patients that I had previously not even considered!
“I really enjoyed the talk on Ebola and learning about the iKnife! I found the event very interesting and it helped me realise the advance in technology and the effect it has on the advancement of the medical industry.” – Participant feedback on the iKnife and microbiology taster event for Pathways to Medicine, 2016.
What was the most challenging part of doing PPI and how did you overcome it?
The main challenge we faced was introducing PPI into a very well-established research project, where only limited amounts had been carried out in the past. We overcame this by setting up a PPI committee within the group and coming up with a clear plan of what we wanted to achieve by involving patients and the public in our research. We then decided on the most effective way to realise these goals.
What advice would you give others interested in doing something like this?
Planning and incorporating patient and public involvement in your research can seem like a daunting prospect, especially if your work is primarily laboratory-based. But there are plenty of knowledgeable people across the college and great resources to help. Before embarking on PPI for the first time, enrol on some training courses or speak to the PERC team for advice. There are many innovative ways to involve people in your work, and with a little help you will be sure to find a way that suits you.
If you’ve got a public involvement story you’d like to share, please get it touch.