Public involvement in CanTest – The researcher’s view

Patients’ views are at the heart of the CanTest programme. Below, Dr Stephen Bradley, clinical research fellow and PhD candidate at the University of Leeds describes his experience of patient and public involvement (PPI) in the CanTest programme.

“Margaret Johnson, PPI lead for CanTest introduced me and my supervisor Prof Richard Neal to Pete Wheatstone in March 2018. I remember Richard was particularly impressed by Pete’s preparedness to challenge our explanations and insist on the use of plain English any time we drifted into using technical language.

I’m now in the design stages of two projects and Pete has been on board with both of these. The projects involve the use of so called ‘routinely collected’ patient data. That is, the kind of data about patients that is collected in the health service for all sorts of reasons but which can be used to answer important questions.  In our studies we want to know about how chest x-rays are being used in the detection of lung cancer and what the effects might be on patients when a chest x-ray doesn’t pick up their lung cancer.

Though health care data is essential to answer these questions, using data can be controversial. Unfortunately there are too many examples when the public’s trust has been betrayed and when patient confidentiality hasn’t been properly protected. It’s really important for us to have a patient representative who can challenge us to make sure that everything we do with patients’ data is justifiable and would seem fair and reasonable to patients. The insight and challenge Pete has given us on the issues has been absolutely invaluable.

Working with Pete has been my first experience of collaborating closely with a patient and public representative on research.  We are very fortunate that Pete has agreed to become a co-investigator as well as a representative. He has an incredible eye for detail and every draft document that reaches his attention is promptly returned with many less errors and a great deal more clarity than the original.  I know that Pete’s involvement in our projects will not only ensure that the perspective of patients and the public are represented but also that the entire quality of the research will be improved.”

To hear Pete’s views of working with CanTest, read our news story on the patient’s voice or find out more about the work of our PPI Group.