Health

Linking patient health data is a huge opportunity for the UK

June 29, 2018

Global

June 29, 2018

Global
Elizabeth Sukkar

Senior research manager

Elizabeth is a senior research manager in global health in the policy and insights team at Economist Impact. Prior to this, she was the managing editor and global healthcare editorial lead at Economist Intelligence Unit’s Thought Leadership division. She is the lead on global health projects that help build effective action to develop a sustainable health economy, with patients at the centre. She has led major research projects on universal healthcare, climate change and its impact on lung health, health literacy, digital health, cancer care, self-care, sin taxes, health financing and patient-centred care.  She is also the lead on The Economist Group’s World Cancer Initiative which has led to the development of new thinking in cancer care and is a key moderator at the Economist Impact Events’ such as the World Cancer Series, Future of Healthcare and Sustainability Summit. She is a member of the Royal Pharmaceutical Society, a fellow of the Royal Society for Public Health, and has two degrees: a bachelor of pharmacy degree from Monash University (Australia) and a Master of Science in International Health Policy from the London School of Economics (LSE). She has been a journalist and editor for more than 15 years, covering healthcare policy, R&D and science for medical journals and UK newspapers, including the British Medical Journal and the Guardian. Before joining The Economist Group, she was the deputy news editor at the Royal Pharmaceutical Society, where she ran the news and analysis desk and was often called to comment about healthcare issues on BBC radio. She also managed an international team of journalists when she was the world editor of Informa’s Scrip Intelligence, a global publication on pharmaceutical and healthcare policy, where she won the Informa Journalist of Year award. Before moving into journalism, Elizabeth worked as a pharmacist in community, hospital and health authority settings, and she maintains her pharmacist registration.

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The UK’s universal healthcare system, the National Health Service (NHS), will turn 70 on July 5th 2018. To mark the occasion, Elizabeth Sukkar, editor at The Economist Intelligence Unit, asks health minister Lord O’Shaughnessy how the UK is using digital health to improve patient care. Many healthcare systems around the world have rich datasets on patients but, often, they are not interconnected. The UK is a single payer system, so it has much potential in this area. The country has started a scheme, called local health and care records, covering 14m people, where health and care records are shared, aiding patients as they move across different parts of the system.

Digital health is such a big topic at the moment. For instance, there are questions about the interoperability of the systems of different health providers and there is much interest in how apps can help patients monitor their disease. What are your thoughts on how the UK can better use this technology?

The NHS has an amazing opportunity because of the way that it's structured. Other countries, as you know, will have multiple insurers or health providers and people switch between them, but the NHS is a unitary single payer comprehensive system. So what that means is, in theory, all the data that is available about the person’s health and care can be joined up to support their healthcare.

Now the challenge has been historically that this has sat in different bits of the health and care system—primary, secondary, hospitals, mental health trusts and local authorities—but what we are doing […is] actually bringing together local health and care records in three locations to join up all those different datasets. [The data will be] at the fingertips of clinicians when they are dealing with patients. [NHS England announced the first three local health and care record exemplars, covering 14m people, in May 2018.]

The next challenge is how we can start to leverage the data that patients are collecting about themselves into those datasets so that we have the most complete possible record of patients’ healthcare.

If you look at this from a patient's point of view, they want to know that whatever bit of the health service they turn up in, for whatever condition they have—whether that's in a local authority, mental health trust, hospital or GP [general practitioner] surgery—that the clinician who is treating them has access to the full electronic patient record with all the necessary information about their treatment and care, or care received in the past.

It is not [about] creating sort of mega databases, it's using interoperability standards to make sure that data is available whenever a person is interacting…with the health system.

The final piece of the picture is…having a suite of apps that can plug into this care record for each person and give sophisticated readouts whether they're interested in their cardiovascular health, cancer recovery rates or mobility, for instance.

We'll be launching towards the end of this year not only an NHS app, which is for every person to be able to see the summary care record and do various things, but also the first suite of NHS- approved apps, which patients will be able to use to support their own self-care.


Have you got a list of priority diseases that you want these apps to target?

It's more of an open offer to see what comes forward. There are some fantastic apps that are out there, which have been approved. One of them is called myCOPD, which helps people with chronic obstructive pulmonary disease (COPD) to manage their illness. So it's more about asking developers to come forward with good quality apps that we can approve.


You'd rather have the commercial sector develop them and the NHS will accredit them and say “we think this is a good app and we recommend health care professionals use them”?

That’s what we are doing initially. We’re just starting out in this area and I think it's important that we take what's already out there in the market and accredit it and make it available. I think you are quite right to point out as we get more used to doing this we would be able to have a more strategic approach to focus on particular disease areas.


How will the government know whether the apps help improve a patient’s management of their disease?

This is why the link-up has to be there with the overall patient record, because we've got to be able to track whether or not the use of apps and the garnering of data, and feedback from patients and clinicians, is affecting outcomes. As well as bringing the data together for direct patient care, you then have to have some means of analysing effectiveness.

In addition to these care record exemplars, towards the end of the year we'll be creating digital innovation hubs [a proposal from Professor Sir John Bell’s life sciences industrial strategy in August 2017], which will be a research portal to allow researchers—whether they're developing digital products, pharmaceutical drugs or medical devices—to look at trends to bridge patient data to look for new treatments.


Are there any projects around the world that you've looked at and thought “this provides a really good interconnection of datasets”?

Health services around the world are digitising rapidly. So from that point of view we're not unique. What is unique about the NHS is the way that it's structured because it is a universal system that cares for everyone all the time. It means that there is the potential to bring together a range of datasets, which other countries wouldn't be able to do because it would be all part of the NHS as well as local authority data.

And that is the big difference, the big opportunity that we have, frankly, is that we can put together a richer dataset—not just existing data. If you look at the work we're doing on the 100,000 genomes project, it is bringing in new forms of data—in that case, genetic and genomic data—to augment those patient records so that we have the richest possible dataset to be able to look for early diagnosis trends in disease development.


In May 2017 the NHS experienced a ransomware cyber-attack, which disrupted NHS trusts as well as confidence in the system. What does the UK need to do to earn patient trust over their data, because one of the biggest concerns is around data security?

You're quite right and I'm very aware as the minister with the responsibility for this area that the possibility of bringing the patient data together for their direct care and for researching new treatments and so on, none of these opportunities will be realised if we don't bring patients with it. And they need a huge amount of reassurance, particularly with things like Facebook [and] the Cambridge Analytica scandals and so on, that the government and its agencies are going to look after their data securely, safely and legally.

I think we've made some really good strides in this area. Dame Fiona Caldicott, our national data guardian, had a review with several recommendations, which we’ve implemented, with providing a new data opt-out [at the end of May 2018] so that people who are worried about how their data was used have more control over it.


Is that opt-out at GP-level only or for all healthcare providers?

It is initially being implemented by NHS Digital for primary care data and then it's being rolled out across the health system over the subsequent two years. We've introduced the data security standards in contracts and we announced [in April 2018] a further £150m investment in cyber-security.

So we are taking a lot of steps to put in policies that increase the robustness of our data security system so patients can hopefully not worry about that side of things and we can focus instead on realising the opportunities from this unique asset that the NHS has.


To what extent do social media companies need to be regulated in light of the effects of social media on the mental well-being of young people? Do you think the government should be more involved in this because there is emerging evidence of negative effects caused by social media on young people’s mental health?

We are really concerned, and speaking as a parent of young children, I am concerned personally about the impact that social media can have, if misused, on their mental health and well-being. And I think this government has been more robust, than any actually, in confronting social media companies and demanding that they take more responsibility.


Could you explain how you are being more robust with social media companies?

For a start [we are] demanding that they take action to remove content, for example. I mean, obviously at the moment we're doing this [on a] voluntary basis. We would look at taking statutory action if they didn't respond.


Can you give more information about what sort of content?

It could be a range of things. It could be anything from pornography, it could be based around cyber-bullying, it could be material around radicalisation. I mean, there are any range of contents that are inappropriate for young people to be using and accessing and we know that a lot of this content is not taken down quickly enough.

If it is taken down, it finds new ways to reappear, and [with] that social media companies do have the ability to actually do this editing work, if you like, more quickly, but they need to devote more resources to it. So that is what we are asking them to do. And you know some of them are responding now but we need a full response from all of them. And if we don't get it then clearly we would need to take more stringent action. 

 

 

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