Why I want – and expect – my data to be used for cancer research
Margaret Grayson is a patient on the steering group for DATA-CAN – The Health Data Research Hub for Cancer. A former therapy radiographer, Margaret was diagnosed with cancer in 2004. Since then, Margaret has represented the patient voice in several cancer research organisations. Here, Margaret considers the power of improved data access for cancer research.
Here we are at the start of 2020, a new decade and perhaps like me you have spent time reflecting on the achievements and perhaps the disappointments of the past 10 years. As a person who has experienced a cancer diagnosis what are my hopes for the future? What is important to me? What is important to you and to the whole population of the UK? In 2019, DATA-CAN – The Health Data Research Hub for Cancer was launched, a UK-wide initiative that aims to unlock the power of health data to improve cancer care. But what value might it be to you and to your family and friends?
Data – a very small word, only four letters and two syllables and yet there is so much power behind this word. It is predicted that one in two of us will be diagnosed with cancer, so prevention, diagnosis, treatment and care should be important to all of us. There are 400,000 new cases of cancer diagnosed each year in the UK. Reading numbers like that really makes me stop and think about the need to have high-quality research, research that will be of benefit both to patients and to the NHS. All research is based on data and I want my data to be used to give the most benefit to others and to myself. But at present there are barriers and limitations as researchers cannot access all my clinical data – there is a bit stored here and a bit stored there, in silos that don’t speak to each other. I used to think that my clinical data was all stored together because it was under my health and care number and accessible to researchers, but access has been an issue and a massive barrier to moving research forward – research that impacts care and outcomes.
So, back to the importance of DATA-CAN with its aim to transform how our clinical data can be used to improve patient care, not just where I live but across the UK for our whole population. I have said I want my data to be used – as a citizen I expect it to be used – but I also want to be cared for, for my data to be protected and kept safe and to have a say in how my data is used. These are all processes that DATA-CAN will help ensure are in place. This is a unique partnership that considers the transparency and security of my data, the quality of researchers who access my data, the quality of research, the type of research – everything about me, because my data is me, not just a unique number but is “Margaret Grayson”.
As you are reading this you may have questions you want answered about the use of your data. If so, please talk to the people involved in DATA-CAN, speak to the patients who are part of the team.
The impact of being able to access data that can inform cancer care is extensive and could help save 30,000 lives per year!
The bottom line? Data saves lives.