My article for the Edinburgh Evening News on why sharing patients data could lead to significant medical breakthroughs.
You can also read the full article on the Evening News website here.
Did you know that brain tumours kill more children and adults under 40 than any other cancer?
I was amazed at that statistic and yet, just one per cent of the national spend on cancer research has been allocated to brain tumours.
Brain tumours are indiscriminate and relentless, and we should be redoubling our efforts and reinforcing our country’s stance as leaders in clinical research whilst collaborating with doctors, scientists and organisations all over the world.
Parliament was recently given the opportunity to push for an increase in the sharing of health data, and to promote greater use of adaptive clinical trials in a debate which paid tribute to Baroness Tessa Jowell and her campaign for people with brain tumours to “live better lives for longer” since her own terminal diagnosis. Increasing the sharing of health data could play a key role in doing this.
Properly collected, anonymised and shared data is extremely important and can assist in providing insight into aspects such as prevention, diagnosis, survival and quality of life.
Assessing large volumes of intricate data is no doubt challenging and takes up huge amounts of time, but it’s what the scientists say they need.
In 2011, a report by the National Cancer Registration and Analysis Service of the existing registry data for brain tumours showed that current data is not sufficiently reliable to provide a core national registry for common brain tumours, let alone rare tumours.
It is in the best interests of future patients to improve existing, as well as develop new, data collection methods to underpin a new national brain tumour registry.
According to a survey by the Brain Tumour Charity, 97 per cent of those with a brain tumour said they’d be happy to share their medical data to help accelerate research. The brain tumour community is clearly eager to do all they can to help improve the lives of others with brain tumours.
Efforts to build on the work done by charities, scientists and organisations alike to gather and share patient data and brain tumour samples, and reform any such barriers which hinder this important research must be accelerated. The Government should champion the use of patient data for research in the public interest for brain tumours and for many other research areas.
We must also look to improve the detail in which patient data is recorded. Some data is not currently recorded by the NHS but is important for people with a brain tumour (data on self-prescribed treatments and alternative therapies is not routinely collected).
Readers will know of eight-year-old Luke Stewart’s treatment in Mexico as a prime example this. Without data like this, there is no means by which to study alternative treatments at population level and present evidence. We simply must do more to progress than we have in the last 20 years.
The brain tumour community is opening its arms wide to the prospect of helping anyone affected by a brain tumour, and we must do all we can to make their wishes a reality.
Edinburgh has some of the best research scientists in the world so let’s give them the data to make the progress we will all benefit from.