Patients4Data is a grassroots campaign about the power of patient data to save lives. Centred around the Patient Data Bill, introduced to the House of Commons by George Freeman MP and supported by over 70 medical research charities, the Bill and campaign stress the value of patient data, the necessity of every patient interaction to be recorded on Electronic Patient Records (EPRs) and that patients should be able to access their data free of charge.
Data opens up a new world of possibilities, with patients able to view their own records, plug into trials and use health apps. We need to move the NHS from the analogue to the digital age. The fundamental question is this: who wants to be better for longer?
The extraordinary rate of progress in the fields of genetics, diagnostics, Big Data informatics and Personalised Medicine is revolutionising medical research and transforming healthcare. The more we know about disease the more we know that different people respond to different diseases and drugs in different ways. The old system of designing ‘blockbuster’ drugs through 15 years of expensive and slow clinical trials – which cost billions and all too often prove not to be reliable indicators of which drugs work in real patients – is over.
The frontline of medical research today is about large scale studies of anonymised Genotypic and Phenotypic data sets to design drugs and diagnostics around specific patient cohorts who the data suggests will respond best to particular treatments. Hundreds of disease charities and patient groups are now pioneering with NHS researchers new ways of developing ‘targeted medicines’. This revolution in the way we discover and develop new treatments offers extraordinary opportunities for the UK to:
The Bill is intended to raise and clarify some important areas of concern in the current framework surrounding Patient Data in Medical Research, and help make the UK and NHS the best place in the world to advance the new diagnostics and treatments for UK patients.
Gaining strong cross-party support both in the Commons and Lords, the Bill and Campaign has attracted significant support from patients groups, clinicians and over 70 Medical Research Charities who have specifically written in to support the aims of the Bill.
Important legislative action has helped strengthen protection of patient data. Further work is underway.