The Brain Tumour Charity was created in 2013 following the merger of three smaller charities, one of which was the Samantha Dickson Brain Tumour Trust. This trust was founded in 1996 by Samantha’s parents, Neil and Angela, after their daughter’s death from a brain tumour when she was 16. Neil and Angela were shocked by the lack of funding available for research and support and decided to create a charity to redress this balance.
The Brain Tumour Charity is now the largest charity of its kind in the world, has committed over £50 million to date to research and won the Third Sector Award for ‘Charity of the Year 2018’. It supports research for a cure for the 140 different types of brain tumours that exist as well as research into ways that the lives of those with brain tumours can be extended and their quality of life improved. The charity also provides direct support to individuals and families, including counselling and practical information, for example, about welfare benefits.
Over the last two years, the charity has been developing the BRIAN project (Brain tumouR Information and Analysis Network) which is a patient-led, pioneering online databank and web-app enabling patients to connect and make better informed decisions about this disease. By sharing their medical and quality of life data, this will accelerate research to find better treatments and a cure.
Through the BRIAN project, The Brain Tumour Charity is aiming to acquire patient data from NHS Digital and Public Health England to provide to researchers to assist them in their work. However, in order to be able to provide this data to researchers, the charity needed a template agreement to ensure that researchers complied with the strict laws around data sharing. Fortunately one of the team used to attend Aston University and knew about the existence of the Aston Law Clinic, a legal clinic in the LawWorks network. Students at Aston University law school work under the supervision of a supervising solicitor to provide free legal advice on business issues - to start-ups, small enterprises and charities.
The Brain Tumour Charity contacted Aston Law Clinic which was able to produce a template of the data sharing agreement that the charity can use with its researchers. If this service had not been available, the charity would have had to spend a significant sum from its resources to pay for the legal advice. Mark Deacon, Product Manager at the charity says, “The data sharing agreement has to be very robust and it would have been expensive to pay for the legal advice to develop it. We are very grateful to the Aston Law Clinic for doing such a good job for us and we know this contract is likely to be used many times during the BRIAN project. The result is that more funds are available for the important work that the charity carries out in terms of research and patient support. ”