NHS: Healthcare Data

Baroness Neville-Rolfe Excerpts

Thursday 6th September 2018 Lords Chamber

[Baroness Neville-Rolfe (Con)]

My Lords, I thank the noble Lord, Lord Freyberg, and congratulate my noble friend Lord Bethell on his excellent speech.

The scale of expenditure on health and social care—some £180 billion together—makes this a very important debate. Because of the ageing population and the growing sophistication of medical intervention, health and care now absorb 21% of public expenditure and account for over 10% of GDP: more than twice the percentage of 25 years ago. This scale, however, means that the opportunity to deliver benefits through digital change and intelligent use of data—in all its forms—is quite enormous. I was delighted that Matt Hancock’s first move as Health Secretary was to dedicate £475 million to enhance technology in health and care. Perhaps the Minister could kindly confirm whether that is new money and the timescales involved for it.

I should start by declaring an interest as a recent Data Protection Minister, a new director at Health Data Research UK and a NED at Capita. Of course, the use of data to advance medicine has a distinguished history. In 1854, in the context of a devastating epidemic in Soho, John Snow showed that cholera was spread by water, after research into the wells from which those afflicted drew their supplies. In 1847 Dr Semmelweis showed, after examination of records in Vienna’s hospitals, that puerperal fever was spread by physicians who had examined corpses and then women in the delivery room, without washing their hands.

From my relatively inexpert position, I shall add three thoughts to the debate. The first is on data as a feedback mechanism. My work in Downing Street on the Citizen’s Charter and my 17 years in retail taught me the value of customer feedback in improving services and outcomes. I often feel that the NHS is not listening to and taking advantage of feedback. I remember turning up to an appointment at Guy’s with a needless cancer scare. When I went in to see the consultant, it turned out that the attachment to the doctor’s letter was missing. She said, “Oh, it happens all the time”, arranging cheerfully for me to have another expensive test. Why not place power in the hands of the patient, as when one is pregnant, and share all test results and reports with them on paper or on an app? I have also been struck by the value of wearables such as Fitbits, which certainly encourage me to get more sleep—an area that has the potential to improve health outcomes and reduce dementia.

Secondly, on digital delivery, we all see how public services fail—often through a lack of incentive—to join up the dots. Providing patients with their health data would help as they could talk to family and friends and ask questions about persistent conditions. The House has done some trailblazing work on AI, which can help with the testing of drugs by repeating checks and variations at a stupendous speed, as I learned from the Motor Neurone Disease Association. It is better than humans at checking routine results like back-of-the-eye tests and X-rays. The disciplined application of digital information can enormously reduce dispensing error. I spotted this in use first in drug administration to the elderly in a BUPA care home.

However, training in and discipline with the medical process is vital. At a recent update with a consultant after a five-year gap, I could not quite believe the graphs of my various tests. Then I saw that the latest data had not been entered and my hard-achieved efforts to reduce weight and improve health had been totally missed, so initially the doctor was completely on the wrong tack. How often may that be happening? Then there is the use of digitisation in online booking, automated patient lists and patient flow, which is displayed so well, for example, at St Thomas’. This should be applied at every hospital and GP surgery in the land.

Thirdly, I want to comment on the public’s trust in the handling of data. I should start by saying how delighted I was at the appointment of Dame Fiona Caldicott, the former principal of my college, Somerville, as the first National Data Guardian for Health and Care.

However, we should not go over the top on data protection: healthcare is provided in this country free for those who seek it. I suggest that in return data in the system should be used by hospitals and scientists, and in some controlled commercial ways to improve outcomes, and that aggregate anonymised data should be published. The excellent Library Note described the myriad sources that exist. I would add another: housing data, as damp, cold housing costs the NHS billions in preventable illness. I know that experiments in Wiltshire to link GPs to housing ills have been successful. All the sources of data can be brought together much better. It will of course be important to protect the data from hackers and others, by sensible precautions and fierce enforcement—a good use, I would say, for some of Mr Hancock’s money. However, we should not get too distracted by data protection as we promote data use for the good of mankind.

Lastly, I ask the Minister what we can deploy from overseas. There is much to learn from the US but also from Australia, which uses Skype-style hospital consultations to deal with remoteness, and from Singapore, where I saw a pioneering use of sensors built into pillows to monitor patients in hospital and care.