Lesley Shannon is a member of the Flatiron Health UK’s Patient Voices Panel (PVP). She joined the panel with a desire to learn more about how real-world patient data can be used for the good of cancer patients in the UK. She is a member of the National Cancer Research Institute (NCRI) and a part of a Cross Party Group In The Scottish Parliament on Cancer.
My background was in a healthcare setting within the NHS in management. I stopped working in the 1980’s to have my children and when they were growing up, I decided to go back to work. However, I had to retrain as the workplace had changed drastically. So in 2005, I obtained my degree and went on to be a lecturer in social sciences. My daughter Laura graduated in social sciences a year before me. I am now a trained endoscopy assessor with the Royal College of Physicians in London. I believe since joining Flatiron Health UK’s PVP that the use of patient data is vital to making cancer patient’s journey easier to navigate. In order for this to be a reality it is vital that we,the public, share our data with companies like Flatiron Health. I want to share with you a personal story of how I see Flatiron Health’s data can be impactful to those living with and beyond cancer.
I want to use my voice here to tell my daughter Laura’s story. My beautiful daughter Laura died at age 31 in March of 2013. Laura’s wedding day was March 1st, a day that was four years in the planning. Laura died 29 days later of colorectal cancer with metastases to both lungs, her liver, and within her bones.
My Dad William also died of prostate cancer in February of 2013. My Dad did not tell us he had been diagnosed with prostate cancer and did not get any treatment for the prostate cancer as he didn’t want to worry us as he knew Laura was so ill.
So instead of the film 4 Weddings and a Funeral my title sadly fitted to 2 Funerals and a Wedding!
Laura died 29 days after her wedding day in a fairytale Scottish Castle. She was in a wheelchair as she had a broken pelvis, yet she managed to walk down the aisle with her dad, she was determined to do so.
Laura had symptoms for over two years. She attended her GP on various occasions and despite displaying various symptoms she was not investigated for cancer and was told her symptoms were attributed to “period pains”. I always tell younger people now “If in doubt, get checked out” you know your own body, don't take no for an answer.
You may be asking yourself reading this personal blog “What has data got to do with this blog about my daughter Laura?”
I joined Flatiron about a year ago to learn more about data and how data can be used to make the patient’s journey easier to navigate. Flatiron Health UK is focused on accelerating cancer research and improving care. This can be achieved by using our data in a transparent, safe and secure way. We have moved on a long way since 2013. We now have precision cancer treatment for patients, this type of care was not available to Laura back in 2013. This progress has been achieved by collecting patient data and applying insights from such data to how cancer care is delivered. If we share our data, we can have a quality of standards and trusted research throughout the UK and beyond.The data processed by Flatiron Health UK can be used to speed up access to new treatments, help NHS Hospitals to improve research, care and with operational challenges, and identify patients for clinical trials faster. If we work together improvements can be made at faster rates than before.
So, if you read this story about my daughter Laura and it resonates with you, consider how sharing health data can impact how people access services and get the treatment they need. It really can make a difference.
Sharing data can prolong patient’s lives and also save patient’s lives.
-Lesley
Lesley has spent the last 10 years working with the Never Too Young Campaign. Her daughter, Laura, was the face of the Never Too Young Campaign when it launched in 2013 – the year Laura died. More of her story, written by Lesley, can be found here.
Every year more than 2,600 younger people are diagnosed with bowel cancer in the UK. To combat this, the BCUK Never Too Young campaign was launched in 2013. It is leading the change for younger bowel cancer patients. Since then, they have raised awareness amongst the public and clinical community about bowel cancer in younger people, campaigned for the identification of those at high risk of developing the disease, provided information and support to this frequently overlooked group, and influenced policy changes to improve early diagnosis, treatment, and care. Their website is a huge resource, providing a wealth of useful information including how to assess the signs and symptoms of bowel cancer - see here.
Twitter @Beautifulmumsie