BRIAN is a pioneering data project that allows those affected by a brain tumour to make informed decisions based on the experiences of others; it allows clinicians to identify and implement best practice; and in due course will allow researchers to access data to reach a cure sooner. BRIAN is an interactive web-app allowing patients to share their data and make a vital contribution towards accelerating research to find a cure. It will collect and store healthcare records, and combine them with patient reported quality of life information. Clinicians and Researchers can access reports on groups of patients from BRIAN to help improve outcomes and speed up research.
BRIAN is a databank – which can sound like a scary term. But BRIAN provides secure and anonymous storage of data about people’s treatment, tumour types, experiences, side-effects, decisions and more. This data will be used to help gain insights into different types of brain tumour and help us reach a cure quicker. Until now, there’s never been an easy way of learning, on a large scale, how and what other people living with a brain tumour have been through. BRIAN will change that and we’re so excited about its potential.
People’s healthcare data, from England initially, will be loaded into BRIAN. For people who give us their consent, we’ll be able to offer a unique service to help them combine their official healthcare records with real-time information about their diagnosis, treatment and the impact on their quality of life. Their experiences will then be able to help others as their data will be shared, anonymously, with those living with similar brain tumours, helping them to be better informed about any decisions they need to make.
BRIAN is only as good as the data behind it though and The Brain Tumour Charity has faced considerable barriers to accessing the data needed to make BRIAN as effective as it can be. For example, it took The Charity over 12 months to obtain its first dissemination of data from NHS Digital (NHSD) because of the complex application process involved. For BRIAN to be as effective as it can be we must find ways to work collaboratively and overcome the barriers that health charities face to accessing health data.
We are looking forward to working closely with the UK Health Data Research Alliance to share our experiences of accessing data and how we are using it in BRIAN, but most importantly to ensure that health charities can access the data they need to continue to make a huge difference to people’s lives.