My Lords, I thank the noble Lord, Lord Freyberg, for introducing this important debate and congratulate him on his masterful tour d’horizon in his speech. I support his demand for a national strategy on this issue—we must not be left behind. I also very much enjoyed the maiden speech by the noble Lord, Lord Bethell; as I sat here, I found myself musing on whether he would follow in the temperance footsteps of his grandfather or the non-temperance footsteps of his father. I look forward to hearing a lot more from him.
As we have heard, the NHS has the most enormous amount of valuable data that could be used for improving patient care in a large number of ways; to me, that is the most important objective. First, data can help healthcare providers to measure their performance against baseline standards and against best practice in other similar providers. It can alert us to problems with patient safety and emerging quality problems. Digging into the detail of data can often reveal where providers are failing and suggest solutions—I shall give an example of that later. Data can assist regulators and inspectors to reach their conclusions. It can inform clinical decisions, through what it reveals about efficacy and outcomes, and can influence commissioning decisions through what it reveals about cost-effectiveness and the effects of strategies on public health. It can be used to assist research and to plan and assess clinical trials, and can help agencies to plan and reconfigure services.
The noble Lord, Lord Kakkar, mentioned the importance of the quality of data. He told us about the massive amount of it, which made me wonder how accessible that data is to researchers—if it is not easily searchable, it will be like looking for a needle in a haystack, in the same way as the doctor, mentioned by the noble Lord, Lord Bethell, looks through his pile of paper files.
We have heard about many issues of concern. First there is patient consent and privacy, about which the noble Lord, Lord Hunt, was so eloquent. We have heard about the need to prevent exploitation and discrimination from the right reverend Prelate the Bishop of Southwark. We have heard concerns about how data is made available to commercial companies, how value can be realised and about the ownership of private data by a few large corporations. The noble Lord, Lord Mitchell, asked us to maximise that value and he is absolutely right, but there need to be enormous safeguards. I very much agree with him that the NHS, too, needs experts. If it does not, the experts in the big data companies will, as he put it, “crawl all over us”.
A transparent public dialogue is needed about how data is currently used, the opportunities for the future and how risks can be managed. It is vital to balance the benefits of sharing data, which are enormous, with concerns about security and confidentiality, but these concerns should not be a barrier to progress. Many noble Lords have mentioned the crucial need to rebuild patient trust following the care.data problems and recent massive leaks—most recently, this was mentioned by the noble Lord, Lord Macpherson.
According to the Royal College of Physicians, patient-level data containing patient characteristics, as well as information about treatments, pathways and outcomes, are the most valuable. Indeed, such data can also reveal inequalities in access to care and the quality of care provided to different groups; it can also help to make comparisons of outcomes from different providers fairer, when we know something about the case mix they face. How fit the patient is at the point of diagnosis and how advanced the disease is at that point are important factors when comparing the outcomes achieved by different clinicians and healthcare settings. But such data should be anonymised or pseudonymised wherever possible to avoid identification of individual patients.
One can also get a lot more out of data if information about the patient can be linked to healthcare activity and outcome information; this requires different systems to talk to one another, which is particularly important in end-of-life care. But this is where the NHS currently falls down. However, I was pleased to learn from a recent briefing by the NHS Confederation, which represents private healthcare providers, that steps are being taken to integrate their datasets with those of the NHS; this will mean patients and the NHS can get a full set of information in one record. On a point made by the noble Baroness, Lady Rock, I was told recently by Simon Stevens that the NHS is no longer the world’s biggest purchaser of fax machines; he was rather indignant when I mentioned that.
There are many examples of where data can be used successfully to improve patient services. Some studies have also been able to motivate settings to improve their track record when linked to payment incentives—a sort of payment by results. This was done as a result of the National Hip Fracture Database. A number of notable national reviews have had tremendous effects on outcomes—such as the National Review of Asthma Deaths, which shockingly found that that a quarter of deaths resulted from inadequate care—which can then be addressed. The Sentinel Stroke National Audit Programme included patient input to help improve services resulting in the establishment of the very successful hyper-acute stroke units in London and Manchester, a model now being copied across the country.
One issue that concerns me is the amount of data available to the patient and how it could help patients to manage their own healthcare. We cannot expect patients to engage with doctors in taking steps to manage their own condition if we do not give them feedback about whether changes they make in their lifestyles result in better health. For example, I would like to know the exact readings for the good and bad types of cholesterol in my own blood tests, so that I can see whether my lifestyle changes are helping. When I asked the question, I was told, “It’s fine—keep on with the medication”. That is no help to me when I am trying hard to get to a position where I do not need the medication at all. I agree with the frustrations of the noble Baroness, Lady Neville-Rolfe, on this matter. Like her, I think we should be able to see our own medical records; we should be able to trust the patient with them.
I also look forward to the day when, living in Wales, I will be able to make appointments and ask for repeat prescriptions online, as my relatives in Scotland already can and my relatives in England will be able to next year. That, however, will require a major step forward in technology, which I do not see on the horizon.
This morning I came across a perfect example of how data can help to improve services. I hosted a round table at which we heard about research into the issues relating to local authorities missing targets for chlamydia screening. Chlamydia is an increasingly common sexually transmitted disease, which can cause major health problems including infertility. There have been several changes, and indeed reductions, in the funding for this screening. Initially the money went to local authorities, which are responsible for public health, as a dedicated grant, and then it became integrated with other funding. Finally, the funding has now dried up altogether and the National Chlamydia Screening Programme simply monitors how well targets are being met and supports local authorities. Unsurprisingly, the targets are not being met, following a year-on-year decline. In 2017, only 20% of commissioning councils achieved the Public Health England target of 2,300 annual diagnoses.
The research that I heard about this morning was qualitative. It sought to collect data on various aspects of the difficulties that councils face with a view to proposing how things can be improved. It turns out that, although funding is a significant issue, public awareness is one of the greatest barriers that councils need help with. They would like more national resources to help them develop local marketing programmes to let people know about the dangers of chlamydia and about the screening and services available to them locally. They also need technical help with targeting the most at-risk groups. I thought it was a good example of where digging deep into the data can help to improve services. I am pleased to know that Public Health England is soon to publish a review on this and all other sexual health matters.
So my questions for the Minister are as follows. What progress is being made on integrating patient data from all health and care settings and making the records available to patients? What measures are being taken to give patients trust and confidence in their data being properly handled? How will applications for outside use of NHS data be handled and against what criteria? Finally, is funding being passed to the Welsh Government to enable patients in Wales to benefit from the technological advances that are already available in Scotland and are soon to be available in England?