Data in Health - The current situation
There is no-doubt that more effective use of patient data is not only significant for empowering patients but also medical research, drug development and the wider health economy – in fact it could dramatically accelerate the whole system. It could also revolutionise the UK’s life sciences sector with exponential benefits to our heath economy.
But we are losing the argument. The debate around patient data has become bogged down in privacy, protection and accusations of commercial vested interests.
Empower made huge progress in its campaign lobbying for the rollout of the Early Access to Medicine Scheme, and there is still considerable progress to be made on drug access. However, there is more to this agenda than just clinical trials. We cannot truly and radically reform medical innovation without effective use of the vital resource at the health service’s disposal – patient data.
Many act as if the ‘data revolution’ is inevitable. It is not. We will only get real value from our health data, and better medicine as a result, if we carry patients with us – and that means trust that this is being done for the right reasons.
Empower: Data4Health will articulate those reasons and put the patient voice at the centre of decision making on how we take the data agenda forward.