NHS director argues big data in healthcare is a 'moral obligation' – care.data relaunched

Derek du Preez Profile picture for user ddpreez January 19, 2015
Director for patients and information, Tim Kelsey, states that there is an “endemic problem” of not using data in the NHS, which is causing problems for patients. But care.data will be relaunched.

tim kelsey
When we talk about using technology to improve services in the public sector, there are usually a few obvious points that help get business cases signed off. For example, saving of public funds is usually a winner. Or the consolidation of a number of legacy systems into one new, better designed, digital system. Making systems and processes more efficient, etc., etc.

However, what we don't often hear is a senior figure in the public sector telling us that using a new technology is a 'moral obligation' - because if we don't, then people's lives are on the line.

Well, that's exactly the line of argument that NHS director for patients and information, Tim Kelsey, is going for when selling the use of big data in healthcare. And it's a convincing one. Not least because it also ties in with all of the traditional arguments for buying into a new technology, in that it will improve services and save money.

By way of background, big data in the NHS over the past year has largely come in the form of the care.data programme. And to be honest, it hasn't been hugely successful, thanks to a massive privacy campaign that effectively put a halt to it last year.

The idea behind care.data is that it will pull together all of the UK public’s GP health records, store them in a central database and share them with the Health and Social Care Information Centre (HSCIC). The NHS believes that the sharing and analysis of information across the NHS will will help to ensure that the quality and safety of services is consistent across the country.

It also believes that care.data will highlight different diseases and conditions that may require more NHS investment going forward. All good stuff.

However, the NHS ran a poor PR campaign surrounding care.data and privacy advocates successfully argued that although the data being stored would be pseudonymised, where it would only reveal details such as age, location and gender, this wouldn’t stop the data being matched with other databases and patients being ‘re-identified’.

As concerns were mounting at the beginning of the year, a leaked NHS document outlined that the data could potentially result in patients being identified. The nail in the coffin, as it were.

And although the NHS argued that it had carried out a publicity campaign by delivering leaflets on care.data to 26 million households across the UK, polls found that two-thirds of people had not had seen them.

But according to Kelsey, care.data isn't dead. Far from it. Last week he spoke at two conferences – WANdisco's Big Data Breakfast and Think Cloud for Health – both at which he highlighted the deficiencies in the NHS' ability to use datasets to improve treatment of patients. Care.data will go a  long way to sorting this out, according to Kelsey.

Kelsey explained that prior to working in healthcare and big data, he was a journalist for the Sunday Times. However, he got into the healthcare field after his mother, whom is a GP, rang him asking for advice about becoming a whistleblower. Kelsey's mother had a suspicion that a radiologist, to whom she had been making recommendations, was killing off his patients.

She did eventually share her concerns and it was found that the radiologist was an alcoholic and hadn't been seeing the recommended patients. He had been stuffing their mammograms down the back of a radiator. Due to his negligence, he had shortened the lives of at least 11 women. Kelsey explained:

There was a human cost to this guy's negligence. But this could have been stopped almost the day it started if the hospital had used the data it had to do something as simple as monitor if doctors were seeing their patients. That is way away from the algorithmic excitement we can bring out to calculating outcomes in healthcare – basic manipulation in data would have saved lives in that case.

I couldn't believe that the NHS was flying blind. And as I dug into this, I began to realise that almost no doctor had any idea about whether or not he or she was harming their patients. I couldn't believe that patients had no transparency about the quality of local services. We know that no regulated public service can deliver value without a very, very positive degree of accountability and public transparency.”

There is an endemic problem of failure to use existing datasets, which is harming people and is not contributing to efficiency.

Kelsey said that the NHS is going to continue to pursue launching a number of big data initiatives, including care.data, because there are “gaps so big and so dangerous” that they have to be filled from a moral and political perspective.

He added that care.data has been redesigned and is already being used in a number of pathfinder locations, which are going to focus on working with local communities to extract data, to link GP data with hospital data, and build new ways in which the NHS can analyse the pathway of care that patients travel down. Kelsey said:

It's just an amazing thing. I'm sure people don't realise that currently the NHS can't tell you how many people are being treated for chemotherapy, for example. And it's certainly not capable of telling you whether or not they are treated for any useful outcome.

With regards to transparency, 2015 is going to be the biggest year that the NHS has ever had. We are very serious about making the NHS a global leader in being a data driven public service.

Kelsey went on to describe a number of additional digital services that the NHS is building and improving upon in order to help

Health practitioner hold laptop on drawn chalkboard
(via Adobe Stock)
patient care. For example, the 'friends and family test' allows people to rate local hospitals and provide text comments on hospitals. The idea being, would you recommend a service to your friend or family member? This month, more than 5 million people will have provided free text comments and ratings on their local hospitals. It is going to be rolled out to GP practices from December.

It's kind of a controversial dataset, because many people believe that you can't invite the public to contribute to the performance management and quality improvement of a service. But you can. This enormous crowd sourcing of public opinion of local services has already developed and improved services. There's a myriad of examples of ways in which hospitals have reacted in real time to real time comments to make a difference.

Elsewhere, the NHS is also going to be using data to better understand the public's genome sequences and the real-time movement of molecules in our bodies. However, it seems that this is still very much in the early stages and not much information was provided on the approach or the drive behind it.

Also, patients are meant to be able to access their own medical records from March this year, making the UK the first country in the world that allows citizens full access to their GP records. Whilst MyNHS is going to be the world's first comprehensive comparative search engine for local service outcomes, which allows patients and citizens to compare data on the quality of services at local providers – everything from the quality of food to the quality of a particular treatment. Kelsey said:

This is an important first step towards an open, transparent service that is evidence based conversation about quality across the piece. All of this is about helping individuals extract value from themselves in a way that will promote healthy life outcomes.

Kelsey also being trying to introduce 'meaningful' online transactional services for citizens – such as booking appointments online and giving patients access to prescriptions online. However, he also identified a number of areas that the NHS needs to move quickly on and is urging the entrepreneurial community to get involved and develop digital services. For example:

  • Mental health – Kelsey said that there is clear evidence that digital tools have a real therapeutic value in the management of mental health. He said that digital cognitive behavioural therapy tools are already available, but they're not good enough. “We need a whole new class of digital health services for mental health patients”, he said. This will eventually lead to an app store being launched on NHS Choices, which will allow patients to download NHS accredited mental health services and for GPs to recommend the appropriate services.
  • End of life care – Kelsey said that there is real demand for people to record in real time, preferences for treatment at the end of their lives and for those preferences to be respected by carers. For example, people choosing to die at home could help reduce stress on local services.
  • Mothers – Kelsey argued that mothers increasingly want a digital relationship with their child's health. They currently get given a red book to record care, but this is frequently lost and can cause frustration. Kelsey believes that this is a simple way to improve the NHS with digital.

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My take

The problem with big data in the NHS to date – namely care.data – is that communication with the general public hasn't been good enough. It's not that people don't agree with the approach and the ideas, but at the moment people feel like they are guessing at what's happening. And they're assuming the worst.

However, I agree with Kelsey and I believe that it's a moral obligation. But this shouldn't come at the sacrifice of privacy. We just need to be assured that the right controls are being put in place so that our privacy is being protected as best it possibly can.

I also get the impression from Kelsey that a lot of the future work and ideas (e.g. the mental health apps) are going to require a lot of collaboration with the broader technology community. How that will play out and the form it will take will be interesting...

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