Targeting Earlier Detection and Diagnosis of Cancer Study: Our PPI Journey
14 August 2023
Last year, the clever clogs over here at ECHO put in an application for a three-pronged (yes you read that right, three) programme of research to tackle Cancer Research UK’s 2034 improving survival milestone. The study focusses on the earlier detection and diagnosis of cancer in patients and how we can better guide policy and research strategies. Three aims, three workstreams, and three different methodologies. Ambitious, I know, but we are nothing if not optimistic. But, before we go any further, you guessed it, it's PPI time. No, not the insurance.
Patient and public involvement (PPI) in research is the foundation of any effective intervention, the solemn pillar upon which good methodological research is forged, and other vaguely construction themed metaphors. The gist is it’s very important. Though perhaps especially so for any studies hoping to affect when and how people receive a cancer diagnosis. Luckily for UCL, us humble folks at ECHO wield deftness and compassion just as confidently as we do pie charts and statistical modelling. I personally am guessing on the stats bit, but I can use the royal we.
Good PPI means speaking to people in a way that’s a bit clearer than double barrelled hyphenated ancient Latin, but that’s often how reading academic papers can feel like. At least for me. I’m hoping others too. We believe that you should instead be proactive in outreach, be co-producing work, be open about the process. Research shouldn’t be isolated from the very people whose lives its outputs hope to affect. I had enough of that from the lockdown years thank you very much. If you’re going to try and guide earlier detection of cancer, wouldn’t a good starting point be speaking to people who’ve experienced a cancer diagnosis?
Queue our first of multiple PPI meetings. After making sure we had de-jargon-ised (yes I’m using a made up jargon word to describe removing jargon, I’m a social scientist that’s my right) our study materials and listed an advert, we very quickly received a huge amount of responses. It turns out people do have something to say if you open up the research process and give them a voice – who would have thought! For us, it made most sense initially to have an open focus group discussion to hear thoughts and feedback on the three different workstreams. We held two of these online as we had responses from people all over the country, some of whom lived with mobility difficulties, and opened the floor for anything and everything people would like to raise about the study.
As Mother Tersa once said, “let no one ever come to you without leaving happier”. And, much like Mother Tersa myself, it was important that everyone at our focus groups felt they had a chance to share their thoughts and experiences with the study team in a comfortable and respectful environment. Perhaps the best indicator of a productive event was the unique insights that we hadn’t previously considered; topics ranged from how best to be communicating risk amongst different and often marginalised patient groups, to people’s experiences with multiple symptoms and how the study outcomes will impact on the diagnosis pathway and ultimately, we hope, increased survivability. After processing all the notes and comments through our in-house Qualitative Analysis Machine 9000TM (yours truly), we were able to come away with a clear actionable report on the key insights from both PPI groups. Not too shabby! Now the real work begins of incorporating all of these edits into the study plan, though thankfully that’s a task I can pass over, sorry - delegate, to the rest of the research team. But don’t worry, there will be many more exciting PPI opportunities to read about, and even to join if you’re a convert after such an enthralling post such as this, here at the growing ECHO PPI-hub. If you would like to see the specific changes made for this study, included below is a handy infographic showcasing our PPI journey: