We posted recently to ask for your help with some research we are helping with, led by a PhD candidate called Elizabeth Dolan. The aim is to improve diagnosis of ovarian cancer using information about people’s shopping habits.
The idea behind the research is that people may be buying health products such as those for digestive health or pain relief before they realise that their symptoms could be caused by ovarian cancer. The research is to look for patterns of shopping that could suggest that someone needs investigations for ovarian cancer. Elizabeth plans to gather data from loyalty cards and then use machine learning (a method of programming computers to learn from data) to find these patterns. It is hoped this will help people and their healthcare professionals to recognise the signs earlier.
Elizabeth needs people with an ovarian cancer diagnosis to provide information about the symptoms they experienced and any health products that they bought in response before they were diagnosed. If you would like to help you can complete the survey at nottingham.onlinesurveys.ac...
Thank you very much for your help. If you have any questions, please do get in touch with me either through the forum or on 0800 008 7054 or email support@ovacome.org.uk
Best wishes
Julia
Ovacome support
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There’s already funded research on this topic being carried out at Imperial College - the Cancer Loyalty Card survey (CLOCS). I’d be interested to know if this is linked in some way, or what the differences are.
Thank you for your comment. We've been in touch with Elizabeth, who is carrying out the research, and she says:
"CLOCS is a great study that we are very much aware of (we work with the same partners as Boots and Tescos, who are striving to help build knowledge around such conditions ). The main distinction is that CLOCS is driven from a purely clinical standpoint, whereas ours is also driven from a behavioural/social standpoint, to think about not just clinical drivers, but how the condition affects women’s lives.
There is crossover of course (this is a good thing)- both of our studies research whether loyalty card data can be used to help women with ovarian cancer get diagnosed earlier. Imperial College London (conducting CLOCS) published their initial research - they asked 70 women with ovarian cancer to donate loyalty card data (from which 11 did, 6 with data before a diagnosis.) using loyalty card data to look for changes in purchasing of products prior to an ovarian cancer diagnosis. They are now trying to extend this to a bigger cohort. In those studies women are asked to fill in “…a brief questionnaire about ovarian cancer risk factors…Participants with ovarian cancer also have a clinical form for a member of their clinical team to complete in the clinic”. Our remit is wider. We want to investigate how the condition is affecting people’s day-to-day lives, not just the purchase of a single product. As such our study is grounded in an in-depth survey, designed with the purpose of collecting the experiences and opinions of women with ovarian cancer into this research. We need to paint that wider picture of people’s lives, and how they are affected to understand how pre-diagnosis could be benefitted.
Most importantly, we want to help provide new insight for women and also new guidelines for GPs - who don’t always have complete knowledge of what to look for to hand, or on-the-ground understanding of the impact of the condition. From gradual life changes, to how a woman gets from first symptom to a diagnosis, and how shopping plays a part in this journey, especially self-medicating. It will help us discover the vital information that needs to be collected and studied alongside loyalty card data, in order for us to make effective discoveries that can be applied promptly in the real-world. So there is much more breadth to consider, and together with the CLOCS, we are focussed on bringing that knowledge together.
Our survey was co-designed directly with Ovacome (so it is informed by the OC community) and a team of research experts, who have previously worked on exploring the expression of everything from health and wellbeing, to mental illness in loyalty card data. We will involve experts in healthcare, who understand the importance of getting knowledge into actual use.
Finally, our follow on-study will work with the full picture of participants (not just a shopping context), working with a fantastic cohort study that has been collecting data, including medical and behavioural, for over 30 years. Connecting this to data from loyalty card, will extend the CLOCS work into a much wider area.
Most importantly I would like as many women as possible with ovarian cancer involved in the design of this research. Ovacome are helping us to do this, and we would like to reach out to individuals in the future to get involved!”
If you have any further questions, or if there's anything that we can help with, please get in touch.
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