Data in health: sharing is caring - a roundtable discussion

Of all the roundtables Holyrood has hosted on health and social care issues, the one topic guaranteed to emerge has been data. 

Whether that has been access to data by researchers or patients, or the sharing of information between services and professionals, it is clear the issue is a hot topic in the modern, digital, post-GDPR age.

Along with British Heart Foundation Scotland, Holyrood gathered some key players together to discuss the progress in delivering the recently refreshed Digital Health & Care Strategy and what barriers might remain.

It was noted that citizens remain mistrustful or confused by what information is kept on them and how it is used.

But as organisations face up to this, data protection need not be a barrier to information sharing, insisted Maureen Falconer, regional manager for the UK Information Commissioner’s Office.

“As I often say, if you cannot find a means through the data protection legislation to share information, it’s not a barrier,” she said. “It’s actually being good. It’s telling you, ‘Don’t do that’.”

Scotland’s collection of health data and its approach to data science is envied across the world. Indeed, when NHS England became embroiled in a row over its proposed database project care.data, experts suggested they look at Scotland’s approach as an exemplar.

But the furore over England’s attempts to link primary care data with the hospitals database, care.data, was so acrimonious that many patients in Scotland became confused and thought it applied to NHS Scotland as well.

Jonathan Cameron, head of public health and intelligence at NHS National Services Scotland, said “a lot of effort” has since gone into communicating what Scotland is doing at a national and local level. 

The Scottish Primary Care Information Resource (SPIRE) programme, which will allow family doctors to see data collected at their own practice and across the primary care system, is currently being rolled out in stages.

New approaches have also learned from 2012’s emergency care summary and key information summary, which allowed clinicians to see accessible briefs of a patient’s individual needs, Cameron added.

However, polls show only one in three people in the UK knows how their NHS data is used, suggested the Health and Social Care Alliance’s Zahid Deen.

“People in Scotland don’t know much about SPIRE, and that’s acting as a constraint to really exploiting data. We live in an environment of  fear and risk averseness around data,” he said.

Stakeholders need to be “a lot better at communicating” to address it, he added.

“There is a general feeling – it’s unspoken – that the more you share about how their data is being used, the more risk you’re exposing yourself to. I think that’s the wrong approach. What we should be saying is how can we explain this better?”

Falconer agreed there was a climate of fear. “The Data Protection Act doesn’t have to be the barrier we think it is,” she said.

Lewis Macdonald MSP described Falconer’s view of the regulation as enabling rather than obstructing as “refreshing”, but added: “It’s when you get to the front line … that the easy option is to say, ‘be cautious’”.

When it comes to the public, opt-in rates remain high in Scotland.

“The vast majority of the public expect data to be shared where it is to their benefit,” said NHS Forth Valley chair Alex Linkston. “We should start on that basis.”

But how joined up is the data that is held? Dave Fitch, head of operations at the Data Lab, said individual clinicians create their own spreadsheets because the systems they operate within can’t support the work they are desperate to do to drive improvements. 

“They’re trying to understand what has happened but the systems aren’t there to give them information,” he said. “It’s about what information people need to do their jobs.”

Putting the right tools in the hands of these clinicians so they can do their work without relying on “home-made systems” is needed, he suggested.

Furthermore, with so many legal views on data protection, it can be difficult to have effective data governance, he added.

Manira Ahmad, head of local intelligence at the NHS’s Information Services Division (ISD), said frontline clinicians and caregivers remain “one step removed from the actual data and information and more importantly, the intelligence derived from it”.

“Data analysts and information managers will never be the caregivers that go out and speak to patients,” she said.

But ISD has started deploying this kind of expertise to localities to focus on data and to start to turn it into intelligence for those clinicians, she added.

“When we’re able to link different datasets together, that really starts a fruitful conversation, and then you start to realise who’s missing from the conversation,” she continued.

But access to that intelligence by researchers has been regularly raised, with experts telling Holyrood the system is “welded shut” and “fragmented”.

Kylie Strachan of British Heart Foundation Scotland pointed to the example of a PhD student who hadn’t got access to the necessary information three years into their work.

“There is a lot of frustration,” she said.

Cameron said a new NHS open data platform will help and will include prescribing information and geospatial data.

“A lot of work is being done” to improve the issue, for example, SPIRE will also help open up primary care data, he said. “But there is a recognition that we need to speed up.”

ISD has struggled with the balance between the pressure for fast access and making sure the quality of that data is maintained, he said, as the prospect of real-time data approaches.

“There’s often the assumption that just because we have got the data, it’s fine, but we’re often at pains to explain that with official statistics, anything that’s used to really drive change, there is a process we have to go through to make sure it’s clean enough and the right data and we can verify where it has come from.”

ISD are analysts, not marketeers, added Ahmad. “It does not come naturally to us,” she said.

Data science will help the organisation to begin to “tell the story,” she added, pointing to an example of where ISD in one locality has been able to link the numbers of people presenting as homeless with other services.

Data from one locality can be pulled out and scaled across Scotland, she suggested, and look beyond just health.

ISD will be part of the new public health body from next year, Cameron pointed out, which will provide “tremendous opportunities” for the potential of data going forward. 

“It will be a completely new way of looking at things,” he said.

But resource will remain an issue, warned Linkston. “Resource will never keep pace with technology,” he said. “We’ve got to accept that. We just need to make sure there are checks and balances.”

Innovation at ground level should not be discouraged, he added. 

“The move from historical data to near real-time is significant,” said Fitch. “You don’t just flick a switch and get the data from yesterday. It’s a huge philosophical, medical and technical set of challenges, and where’s the money coming in to do that?”

Interoperability “is not just about processing systems”, said Ahmad. “It’s about people and how they interact with the data they have.”

She added: “We have enough analysts in Scotland, but they’re all busy doing little commissions.”

“I don’t think we can ever meet demand,” said Cameron, adding that sometimes expectations can become unrealistic. 

A new process called “synthetic data”, which converts anonymous records into an alternative workable dataset, will help research, app development or testing of an IT system, he predicted.

Meanwhile, shared tools like open-source ‘interactive dashboards’ will help people do analysis themselves, he said.

Procurement within the NHS “could be a little more innovative”, suggested Miriam Fisher, programme manager at the Digital Health and Care Institute, when the process is slow and favours big multinationals.

CivTech, a programme which links public bodies with specific problems to innovators, aims to address this. 

Fitch said the Cancer Innovation Challenge had funded two solutions which allowed patients to “do stuff with your phone and it updates your medical record”, but pointed out smaller products like this would not count in the procurement process for a national programme.

Big infrastructure projects “never keep up” with technology, said Linkston, but the data must follow the patient.

“I don’t think we should focus on the technology. It comes back to people,” said Deen.

Digital access to and control of our own health records will help, he suggested. 

“It won’t just be based on information captured by health professionals, they’ll be feeding in information on their own devices.”

Comparisons with the system in Estonia, where people control information for their care, are not relevant because it was a system built from scratch, it was agreed.

“We can’t think of it in an isolated way, we need to think of it in the round,” Deen said. “[As] something simple. Designed with people is probably what will unlock a lot of the challenges here.”

The notion of a single record used by all services “just wouldn’t be feasible”, said Cameron, but he agreed different records could be better shared. “Different records have different meanings, depending on who is using the system.”

The “direct contact” with patients provided by the third sector can be better used to inform and empower people in sharing data, suggested Ahmad. “I remind myself that every piece of data has a face, every face has a family or friends that sit behind.”

The dialogue with the public will be easier when people receive a “basic benefit” of data working for them, predicted Fisher, pointing to the example of free bus passes being issued automatically in Finland when people turn 65.

“The big thing Estonia has cracked is they understand citizens have their own digital identity,” said Cameron.

But if Scotland, which doesn’t even yet link NHS and social care information, let alone have a single digital identity for citizens, cannot emulate Estonia, what can it do?

Cameron said interoperability is where “Scotland lags behind” after “lots of false dawns”.

“The big challenge is the information being the right amount, the right type and the right thing for that right situation. How you personalise it.”

There needs be greater clarity from the Scottish Government about a technical direction of travel and standards beyond just “cloud first, open source”, he suggested. 

“It needs an element of co-design as well,” added Deen. “It can’t be presented as something you need to connect into. To get it right, it needs to be a collaborative effort.”

That would include across government departments, he said, as well as citizens.

The public could be brought along with effective communication and myth-busting, said Linkston and Falconer.

In terms of systems, “we need to be brave and sweep away some of the legacy systems we have,” said Cameron. “I think we have suffered over the years from constantly building and adding on. Now is the opportunity to say enough and go for it.”

“We also need a sense of urgency,” suggested Deen, but he added a data-driven economy also requires a longer-term holistic view as well.

Fitch said Scotland was a “data destination” but needed leadership. “There’s no technical solution to a political problem. We need people to lead on this, because it’s the right place and the right time to be having this conversation.”

MacDonald said the discussion had reaffirmed the conclusions of the Health and Sport Committee: “There needs to be a sense of urgency and ambition."

This roundtable was in association with the British Heart Foundation