interviews

Delivering big data benefits ‘responsibly’

Andrew MacLaren, the new director of information and analytics at the Health and Social Care Information Centre (HSCIC), discusses how he wants to take big data forward to deliver benefits to patients and healthcare providers. David Stevenson reports.

Carefully crafted big data programmes across the NHS have the potential ability to enable organisations to perform at a level that is ‘unprecedented’, NHE has been told. 

In his first media interview since becoming director of information and analytics at the Health and Social Care Information Centre (HSCIC), Andrew MacLaren was confident that provided strategies are developed “carefully” and “responsibly”, major benefits can be achieved. 

New to the NHS, MacLaren brings 20 years of international information management and analytics expertise at executive and delivery management levels, having occupied roles with Accenture, IBM, EMC and other major organisations. 

Only a few weeks into his new role, he told NHE: “I understand both the value and the deep need for keeping data safe and customers safe. I work in a multi-platform environment developing solutions that first and foremost maintain the integrity of the clients’ privacy data.” 

Going forward at HSCIC he said there will be a “whole new process” that “we are going to be adding to our data services platform, which will add an added layer of security and comfort for patients with regards to their information”. 

“We are building upon the safety with the advent of new data that is coming in from a social care stand-point,” said MacLaren. “But we are at early days with that. We will be developing our strategy and our envisaged architecture for dealing with this particular new data.” 

Data linkage 

During a visit to HSCIC’s office in Leeds, Chris Roebuck, director of benefits and utilisation at HSCIC,  discussed how the Maternity and Children’s Data Set (MCDS) has been developed to help achieve better outcomes of care for mothers, babies and children. For instance, the dataset will provide comparative, mother and child-centric data that will be used to improve clinical quality and service efficiency; and to commission services in a way that improves health and reduces inequalities. 

“This data collection is going to be immensely important,” he said. “Historically, we’ve had very rich data but quite limited to certain sectors, for instance the hospital episode statistics data set, which has been collected since 1989 and has around a billion records of patients being admitted and outpatients. By adding richer data around certain areas like maternity and children we’re able to build up a much richer picture of what is going on. 

“In particular, the potential for data linkage and joining up different bits of a patient’s pathway through care will allow us to see things much more closely. 

“We have a very clear picture of what is going on in certain areas but others, particularly social care, we don’t really have a very detailed window yet. We have lots of very helpful aggregated data sets and actually being able to map a patient pathway so you see their acute phase of care and what happens after or before that will be really useful. So linking this data will be key.” 

New datasets 

The Maternity Services Data Set provides a national standard for gathering data from maternity healthcare providers in England, and the data has started being collected by providers. Another new dataset – Children’s and Young People’s Health Services (CYPHS), which is planned to be mandated for central flow in October 2015 – is also expected to deliver significant benefits. 

The CYPHS data relates to children and young people from birth onwards, until but not including the person’s 19th birthday, whether in specialist or generalist paediatric services or adult or non-age specific services. It is expected that this will deliver “robust, comprehensive, nationally consistent and comparable person-based information” for children and young people who are in contact with CYPHS. 

Tony Childs, programme manager for Maternity and Children’s Data Sets, told NHE that one of the outputs of this project will be the creation of an online data visualisation tool with limited analytical functions. 

“It will allow you to click-and-drop,” he said. “But there are different levels of this. For example, there is the public level for anyone to check their provider or area and see high-level statistics. There are then different levels for registered users who will be able to create their own charts.” 

He added that the granularity will depend on who the person accessing the system is, but it could provide major analytical benefits for the sector. 

Childs added that the ultimate aim is to go from a cradle to the grave situation with regards to data collection. However, he was realistic about this. “Even if we started collecting all this data today the cradle to grave is 90 years away before we have a complete dataset,” he said. “The ultimate dream is that, but in reality it will take a long time.” 

Data science 

Although MacLaren’s background has mainly been in the private sector he has worked within the healthcare environment before. For instance, in Canada he helped health organisations restructure their finance divisions. And although the environment was different – there were 12,000 innovative business users overseeing 30 million users – the project was still “big data sensitive”.  

Going forward, he wants to see a greater use of data scientists not only at HSCIC but across the entire health system, an approach advocated by EMC’s UK public sector chief information officer, James Norman, on page 108. However, MacLaren did add that this will take time. 

“It is very hard to get large numbers of data scientists simply because they exist in different formats,” he said. “But can we train them and shape them, yes. However, there is a time factor for this. Is there a cost factor, yes. Is it ideal to get them in if they are data scientists who have industry vertical experience in healthcare, pharmaceuticals, biomed, biotech, of course it is.” 

MacLaren is positive that with his big data background he can help drive HSCIC’s various data initiatives, like CYPHS, forward in a “positive and responsible way”. 

“We have so much hugely beneficial information. It is incumbent on me to ensure that what we build is generally a world leader and world class capable data science delivery programme,” he said. “This will be cross-organisational. In short, I think there is a very strong initiative to make this successful within the NHS meeting a data science and big data programme. 

“What I was hoping to do with the big data, in a very responsible way, is to leverage that information effectively for the purposes of gaining more granular insights while using it in a safe way. This could be used to improve medical research for the purposes of, for example, expediting paths to cure approval for potential cure development.” 

Good governance 

An area where MacLaren says that the private sector has been making headway with big data is into governance. Roebuck told us that information covers everything HSCIC does as data is very powerful and can paint a vivid picture of what is happening to patients. 

“But alongside that, to get more granular data, there is the risk of identifying people through that data set so data needs to be handled with the utmost care,” said Roebuck.

“Certainly as an organisation we are implementing a number of steps around transparency and the public’s data. Citizen understanding and the use of their data – so they can make informed decisions about their data – is very important. The ultimate vision is having a much richer model where patients can ultimately see exactly how their data is being used and what benefits are being delivered through this. That is the panacea.” 

He added that an example of where big data has been used successfully by HSCIC has been the patient reported outcome measures (PROMs). 

PROMs measures health gain in patients undergoing hip replacement, knee replacement, varicose vein and groin hernia surgery in England, based on responses to questionnaires before and after surgery. 

“Using that it is possible to take that data and link them to our hospital data sets to compare by organisation around the rate of improvement for patients,” said Roebuck. “This has been a really powerful set of data in a number of organisations and a number have used it to identify improvements. For example, Barnsley Hospital NHS Foundation Trust identified a number of things they needed to do after scoring quite lowly and then scored much higher.” 

The future challenge 

NHE asked MacLaren for his thoughts on the challenge ahead of developing the HSCIC’s strategy for the future collection, management and dissemination of nationally held data and information. 

“Hopefully I can open a lot of eyes, in a positive way, to how business operations can find new ways to both save and, believe it or not, invest to make the various inner organisational divisions better based on their allocated budgets,” he said. “And, at the end of the year, have much deeper understandings of their KPIs, which we will hopefully build on.”

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