As one of the CIOs of the UK NHS, Mark Dundon is utterly convinced that healthcare big data can deliver huge benefits to patients. All he has to do now is navigate a web of complex regulation and an extremely suspicious public.
In February of this year, the UK National Health Service was putting the final touches to its grand information-sharing project, Care.data. This ambitious scheme was conceived as a giant database of medical records showing how individuals have been cared for across the GP and hospital sectors. At first, it had the backing of most of the medical community and some of the most influential patient groups.
But as launch day approached, criticism of the scheme mounted. the British Medical Association, Big Brother Watch and the Association of Medical Research Charities all raised objections. With just a few weeks to go, Care.data was postponed till the autumn.
So what went wrong? Much of the criticism was around the presentation of the idea. Care.data pledged to leaflet drop every household in England. But hardly anyone remembered seeing the leaflets. A video was made, but didn’t air on TV, just YouTube and NHS England’s website.
And then there was the big one: the sharing of data with private companies. Yes, the public was being given an opt-out option, but critics argued that the pitiful publicity campaign means they would have no idea who was going to get access to their largely anonymized medical records.
Sensitive about healthcare big data
It was all a bit of a mess. And it illustrates the complex attitude of the public when it comes to data. They appear extremely sensitive in the area of public health, yet very relaxed when it comes to social media, for example.
This is something Mark Dundon knows only too well. He had worked extensively in CIO roles across the private sector, with spells at HSBC and Plusnet. But he’d made a promise to himself to apply himself to the public sector after his twins were taken sick and saved by Sheffield Children’s Hospital. He started in April 2014.
“When I was at HSBC, we managed data across trillions of pounds of financial transactions for millions of real people and businesses,” he says. “But there I never saw the same degree of sensitivity among users to this as I do now toward patient data. It’s very different.”
Despite this, this NHS CIO believes passionately in the power of business intelligence to transform public health. Why? Because of its increasingly complex nature.
He says: “The NHS is struggling to meet healthcare needs because of an ageing population and a rapidly changing demographic picture. And yet the budget is getting smaller in real terms. It’s obvious that healthcare bodies are going to need data to make the right decisions for their patients.”
To understand how the NHS makes decisions about where to spend money, you need to know about the new bodies set up to manage this vast budget. So, a brief warning: there will be acronyms. Until recently, Primary Care Trusts commissioned and provided services across all NHS entities. All that changed in 2013, when PCTs were replaced by Clinical Commissioning Groups (CCGs), which commission services, and Commissioning Support Units (CSUs), which fulfill them.
CCGs are responsible for local health services (GP surgeries, hospitals, day and community centers, mental health and so on), and – crucially – they can buy from any CSU anywhere in the UK. Or if they wish they can order from private sector service provider.
Clearly, this internal marketplace will not fly without access to quality data. Dundon says: “The CCGs each have different challenges. They may have a rich or poor population, a static or transitory population – and this can change all the time. They could spend £250m on a project that might only affect two per cent of their patients. They need to know, and that’s why business intelligence is crucial.”
Make it digestible
However, Dundon acknowledges that gathering and delivering the data is not enough. It has to be digested. This means presenting the information in the correct way.
“Big data is meaningless unless someone can use it to make better decisions. So we need analysts who can look at it and contextualize it for local contexts. They’re difficult to find. But when you put a great data person alongside a clinician doing trend analysis, that when something magic can happen.”
It’s an optimistic view, but then Dundon is a positive guy. He believes that the technical challenges of a system that delivers coherent, useful info across a multitude of different devices can be met. Instead, he contends that his real task is selling the vision.
“Gone are the days when an IT manager could sit in the back office cut off from everyone else. Today, we have to set the strategic direction and then convince all stakeholders. So we need to think less about the tech itself sometimes than soft skills – like talking to people in plain English.”
Track your own
In the longer term, these requirements can only become more important as technology enables people to take charge of their own health. The rise of cloud services, smartphones and wearables has made it possible for people to track clinical data. Surely it makes sense to share this with the professionals.
Unsurprisingly, Dundon is a fan who believes this tech could be transformational.
“The entry point for most people to the NHS is either their own GP or Accident and Emergency. I think we should look at automating as much of that process as possible. Why can’t people serve some of their own health needs at home? Why can’t they teleconference with a doctor from an iPad? Why not? Of course, it comes back again to who owns it – the patient? The doctor? The hospital? That will be trickier than sorting out the tech.”