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