“Empower: Data4Health’s mission is to put patients front and centre of the debate for the better use of their data – for the benefit of them and our NHS.”
Who we are – the patient voice at Westminster and beyond
As Empower: Access to Medicine we led the patient charge to see vital reform to clinical trials, resulting in the introduction of the Early Access to Medicines Scheme. Empower has now taken on a new important challenge – to change the narrative on the debate around the use and implementation of health data. Empower wants to see the data at the disposal of the NHS used to produce more effective medicines and better outcomes for patients at all levels of the NHS, from Primary to Acute care.
Empower has reenergised to form Empower: Data4Health, which will drive the important debate around medical data and how it can help deliver for patients in a more digital NHS.
What do we want?
It is absolutely right, indeed vital, that patient safety and individual privacy is at the heart of discussions around how our data is used and collected, as it is after all our data; but there is no-doubt that patient data is central for empowering patients, drug development and the wider health economy. We need to empower people to be in control of their data so that they can use it to benefit society as a whole.
The potential offered by personalised medicines and genomic diagnostics to significantly improve patient outcomes could dramatically accelerate the whole system. Indeed, the Science and Technology Select Committee has previously stated that the value of ‘big data’ to the health sector already equates to £14.4bn. In fact analysis has found that efficiency savings of between £16bn and £66bn a year could be generated in the NHS if data was deployed properly.
Empower wants to see the national rollout of integrated electronic patient health records as soon as possible, as well as statutory underpinning for the sharing of health data.
However, that requires our health system to modernise, digitise and reform in order to collect, collate and utilise our health data in the right way and for the right reasons.
How do we do it?
First and foremost, we will put patients front and centre of this debate. We need to retain the crucial focus on empowering patients, policy makers, charities, academics and the pharmaceutical industry and use health data to speed up the delivery of life-saving and life-enhancing treatments.
Empower: Data4Health will continue to put pressure on the Government and regulators to play their part in delivering these reforms. This will include appropriate legislative reforms as well as implementing the recommendations of the Accelerated Access Programme. Empower will continue to be the pre-eminent coalition of patients, charities, clinicians and industry to ensure that policy reforms have the needs and rights of patients at heart. We will also continue to hold the NHS to account where it is not serving patients best interests.