MP George Freeman: There is no reason why our health records should not be put online
07:00 20 February 2014
copyright: Archant 2013
The NHS commitment to taxpayer-funded universal healthcare, available at point of need free of your ability to pay, is one of the jewels of our country. Its principles, and the commitment of the staff who work in it, are the envy of much of the world.
But the pressures of an ageing society, the growing cost of modern medicine, and the extraordinary pace of medical technology are creating huge pressures on the structures of the NHS, which are still much as they were when the service was conceived.
Pressure on ailing structures is the reason too many of us in Norfolk have had bad experiences of medical care in recent years. Particularly among our elderly community, the lack of integration between hospital and social care continues to cause huge problems.
With the serious management failures at the East of England Ambulance Trust and the Queen Elizabeth Hospital on top of the shocking revelations of the Francis Report, it is no surprise that many in our region are asking increasingly tough questions of our NHS managers.
In many ways the Francis Report has been a painful blessing, helping to change the terms of reference of the debate.
I believe Jeremy Hunt has been right to redefine the role of the Secretary of State for Health as the champion of patients rather than the “machine”. The government’s commitment to publish NHS Outcomes Data and allow comparisons of data at different hospitals and parts of the country is driving a new culture of accountability and transparency.
Failures are being flushed out, which is painful. But in the end this new dawn of transparency and accountability can only be to the benefit of us, the patients, who have paid for it all, and too often had to be too patient for too long.
Underlying this change is the power of data.
Across all Western societies, healthcare systems, clinicians, researchers and patients are starting to discover the power of data and information in driving up healthcare standards and outcomes. The NHS is home to vast reservoirs of data on diagnosis, treatment, outcomes, drugs and performance, which is key to planning the 21st century medicine we all want to see.
The availability of integrated data on health and care interventions across the NHS and Care sector is key to our being able to deliver three vital developments in modern medicine:
• The use of disease and treatment outcomes data to drive research into more accurate diagnostics and drugs;
• The empowerment of patients as healthcare citizens – allowing us to take more control over our health;
• The planning and delivery of public health and better integration of hospital, GP and Community Care.
But there is a problem – in fact, a series of problems. The data is not yet integrated. The landscape is getting better, but it is still very patchy.
Hospital records are very fragmented. There is almost no proper integration of patient records with the social care system.
Electronic patient records are not yet mainstream in our health or care sectors for patients or clinicians.
Care.data, the programme currently being rolled out by NHS England, is seeking to get a more complete data picture of healthcare in this country in order to continue drive up standards.
It is a start. But I think we need to go much further.
Data shouldn’t just be about Whitehall mandarins looking at data.
It should be about empowering citizens to have information about our own health.
We are used to having easy access to electronic information about finances, insurance and travel, so why not our health?
That is why I have recently introduced a bill in the House of Commons which sets out new statutory rights for patients to be able to access and use their data, and a new duty of care on NHS and care providers to ensure patient records are properly integrated and maintained.
My bill also calls for patients to be able to access their own electronic records without being charged.
At the moment some GPs are charging £10 to £25 for patients to access their own records. This is wrong.
In order to ensure we receive the right treatments, patients should have easy access to records to help drive up accountability and the quality of care.
As well as ensuring records are updated and easily accessible, my bill – which has already secured the support of over 70 medical research charities and a large number of patients and clinicians – aims to reassure patients by establishing that ultimate control over our records lies with us, the patients: “Your NHS: Your Data”. We need to change the culture inside the NHS so that patients who request data are not sneered at or resented as troublesome but treated as enlightened health care citizens.
In a few years’ time it will be unimaginable to think of health records and patient monitoring as it is today, with paper records, cardboard boxes, partial digitisation, fragmentation across hospitals, and community care a black hole. Proper data collection, monitoring of outcomes, and empowerment of patients with greater information is a key driver of modern medicine and the 21st Century NHS we all want to see. For the benefit of all of us here in Norfolk, and across the UK, we must make sure that day comes sooner rather than later.
• George Freeman is Conservative MP for Mid Norfolk