Blog by Madi Fairey and Max Bayne, both final year medical students at the University of Cambridge
Madi and Max set out to perform a systematic review synthesising the literature on the effect of provision of personalised cancer risk information to individuals at population level risk on accuracy of risk perception and psychological responses; the resulting paper, for which they are joint first authors, was published in Patient Education and Counselling on 11 August 2019. Their research was supported at the Primary Care Unit. Their blog describes their research journey.
Tell us about the findings you discuss in your newly published paper?
Probably the most interesting finding from the paper was that immediately after being given personalised cancer risk information, 87% of individuals were able to recall the number but less than half believed that to be their risk. Up to 71% believed their risk to be higher than the estimate. This shows that although the vast majority can accurately recall their risk, the majority still believed their risk to be higher. These findings in particular highlight the conceptual problems in understanding risk information that have previously been reported across both cancer and other diseases, especially the tendency for people to resist information that is communicated to them by experts.
Another important result was that we showed that there was either no change or a reduction in cancer associated worry, anxiety and fear after being given a personalised cancer risk score. A concern that prevails in the area of research and policy concerning giving patients personalised risk information is that it might have detrimental psychological effects, but the results of our paper contribute to a growing body of evidence that shows that this is not the case.
The third top message from our paper was that personalised cancer risk information led to people being, on average, more accurate when asked what their percentage risk of cancer was than they were before they got the information (as one might expect). However it had no discernible effect on how accurate they were when asked about their risk of cancer in comparison with others. Again, this finding contributes to a growing body of research that suggests that our internal model of our own risk in comparison with others is complex and influenced by a number of sources including personal and family history. ‘Expert’ input from a medical professional is only incorporated into this model, rather than replacing it.
What difference might these findings make to patients and clinicians?
We felt the most important finding from the paper for clinicians was the recognition that patients who may appear to understand and recall risk information provided to them most likely do not believe that this information reflects their own risk. The reason for this is highly complex and therefore it is not likely to be overcome by a single consultation or intervention. However if clinicians are more aware of the processes whereby an individual uses information to construct their perception of risk, hopefully this will better equip the clinician to tailor explanations of risk and support their patients in understanding and shared-decision making.
How did you carry out the research?
A systematic review involves performing a thorough and systematic search of the existing literature on a subject, in order to extract and compile the relevant data. The process enables researchers, hopefully, to draw stronger conclusions than they can from individual papers alone. To do this we developed specific criteria for papers to include in the review and carried out a search to find all the papers that met those criteria. We then looked through the papers, first just the titles and abstracts and then the full papers – this process took a long time! Once we had all of our papers, 22 in our case, we went about extracting the relevant data, pooling the results and trying to draw some conclusions.
You presented the paper at the regional SAPC conference on 25th January 2019. How did you get on?
We were lucky enough to present the work as an oral presentation at the SAPC Regional conference on the 25th January 2019. This was the first time that either of us had presented any work as an oral presentation and so was a fantastic opportunity.
Thankfully it all ran smoothly and we received some very thought-provoking questions, we also thoroughly enjoyed getting to attend other people’s presentations – it gave us a lot to think about. It was a very busy day for us because we were both performing in the Addenbrooke’s Charity Pantomime that week, we had to be very careful to make sure we had no residual face paint when presenting!
Following this presentation we were also chosen for an oral presentation slot at the INSPIRE conference run annually by the Cambridge University Students Clinical Research Society (CUSCRS). This time we got to present the work in the William Harvey Lecture Theatre to our peers and lecturers. We were lucky enough to win a prize for this presentation.
How and why did you both decide to focus on the topic of personalised cancer risk information?
Having seen the use of personalised cardiovascular risk scores such as the QRISK2 score on our GP placement, we were both interested to find out more about the application of this personalised risk information with regards to cancer.
We met Dr Juliet Usher-Smith and Professor Simon Griffin, from the Primary Care Unit’s Prevention Group, through a CUSCRS “speed dating” event in our 4th year where students could meet with researchers to find out about any opportunities students could be involved with. When we heard Juliet discuss this topic it caught our attention. It also worked well as Juliet already had this research in the pipeline and therefore we didn’t have to start from the very beginning.
I found the process very inspiring, we were exposed to the ups and downs of trying to perform some research from start to finish and get it published, but the satisfaction of seeing it through, getting to present it and have it published was definitely worth it, and it has encouraged me to look for more research opportunities in the future
– Max Bayne, medical student
Juliet very kindly agreed to supervise us through the process of writing a systematic review on this topic she was researching. Everyone we had contact with at the Primary Care Unit was incredibly supportive. At the beginning we both had no experience of conducting a systematic review but everyone was very patient with all our many questions! We also met other members of the team when the Unit set up a practice oral presentation run-through for us. This was an invaluable opportunity and we were very grateful for everyone’s comments.
You have an impressive list of co-authors on your paper – how was the experience of working in this team?
We were very fortunate to have input from leaders in the field. It was a great experience to be part of a project where we saw how you could collaborate with researchers all over the world through skype and email.
Before undertaking this research project I was unsure if I was interested in academic medicine, having only been exposed to laboratory research previously. However through undertaking this almost 2 year process from start to finish it has inspired me to get more involved in clinical research. I have since assisted and published with other research groups in Addenbrookes Hospital and I am currently in the process of applying for an Academic Foundation Programme!
– Madi Fairey, medical student
Read the paper
Queries: Lucy Lloyd, Primary Care Unit Communications Manager