Special Report: Interoperability
The new secretary of state for health and social care has placed interoperability at the heart of his vision for the NHS. So is the long-standing nut of information sharing between systems about to be cracked? Jennifer Trueland investigates.
With his initial technology strategy, secretary of state for health and social care Matt Hancock has made it perfectly plain what he wants to see in the realms of NHS IT – and interoperability is right at the heart.
Outdated and obstructive digital systems will become a thing of the past, he has frequently stated. A set of standards will be the order of the day, to ensure systems can speak to one another. Indeed, he has said such standards will be mandatory.
It would be easy to react with cynicism to Mr Hancock’s vision which, after all, is hardly revolutionary. He is not the first health minister in a UK country to express the wish that systems could better communicate with each other, and it’s fair to say that none has entirely turned that wish into reality yet.
But there is some optimism that this time, at last, the conditions are set fair to bring the interoperability goal closer, with concomitant benefits for patients, clinicians, and local and national health and care economies.
A nut about to be cracked?
So is the interoperability nut about to be cracked – and what will be necessary to make it finally happen?
For GP and IT leader Amir Mehrkar, the big change that is needed is less about process and more about values. “For the NHS, I don’t believe the challenge of interoperability is technical. The technology exists – across the world, information is flowing,” he says.
“But I don’t think we in the NHS often think about the values around information sharing. Values are intrinsic to the way that we [as humans] behave but one of the problems has been that sharing patient information isn’t seen as an obvious value.”
Mehrkar is co-founder and co-chair of INTEROPen. The organisation brings together the NHS, industry and other stakeholders to work collaboratively on accelerating the development of open standards in the health and care sector.
As a practising GP with a burning interest in how IT can help clinicians and patients, he had felt there was a need for a forum where different stakeholders could get together in an open way to drive forward the interoperability agenda.
The board – which includes representatives from national organisations including NHS Digital, standards bodies and NHS England, as well as vendors and the health service – meets each month to discuss ideas and projects.
INTEROPen’s role in coproducing FHIR profiles is an example of the positive work that’s going on, he believes. “I’m excited by the people who have put their organisational labels aside and want to join together to do the right thing,” he says.
Neill McAnaspie, solutions director at IMS Maxims, believes that INTEROPen is a big part of the reason for the advancing of the interoperability agenda.
“I think there’s been a huge amount of progress [on interoperability] in the last year and INTEROPen is leading from the front,” he says. “For the first time we have an organisation leading on the development of open standards and there’s a lot of industry buy-in.”
Anne O’Hanlon, solution consulting director at Orion Health, believes that greater collaboration actually encourages innovation. She says there is a growing recognition that working together and sharing information does not lead to companies losing their competitive edge – quite the contrary.
“I think there’s a realisation that all of our software works better when it’s plugged into other vendors’ software,” she says. “The market is big enough for everyone.”
She believes that getting to the point where interoperability is a given, with everyone working to the same standards, will create a level playing field and encourage innovation. “I’m very excited by the vision that Matt Hancock has set out,” she says.
The need to deliver on open standards is not the only barrier to be overcome to make interoperability a reality. Most agree that it would be easier to start with a blank sheet rather than the current situation that sees organisations tied to legacy systems and outdated infrastructure that might – or might not – contain data relevant for today’s care.
Love me tender
Nevertheless, the interoperability agenda was already having an impact on the health and care system and filtering through into tendering processes, for example, even before the health secretary was so explicit about making it a priority.
“Every procurement I see now has an interoperability element, but it’s much wider than that,” explains Brian Ellwood, product manager with Soliton IT. “We’re starting to see that people are actually having more need to share things. NHS reorganisation – for example, STPs and trust mergers – has been a driver for interoperability because different organisations are having to work together.”
According to Ellwood, the way that finances are organised is a potential barrier to greater interoperability. “Everyone knows that healthcare organisations should be sharing more information, but if two organisations need to share you need something to link them together. The question is who pays for that.”
He would like to see funding made available at a national or regional level to pump prime and incentivise sharing arrangements. “With the finance and the will you can get over that barrier and we hope it will happen,” he adds.
Multi-faceted and on many levels
As to whether interoperability will be ‘cracked’ soon, some believe this is the wrong metaphor. “Saying it’s a nut to be cracked somehow suggests that tomorrow will be better and yesterday wasn’t as good,” says David Hartman, manager and senior business developer in the Population Health team with Cerner.
“There’s a lot of good stuff going on. The reality is that interoperability is multi-faceted and there are many levels to it.” And so there is unlikely to be one big bang where it is suddenly achieved. Rather, it is a process that will continue to develop.
Sean Ridley, clinical lead with Cerner’s Health Information Exchange, says while it has been encouraging to see return on investment where information sharing becomes a reality, there is more work to be done. “Part of that is educating the public about the safeguards in place to keep their information safe. That way, they can be confident their information is being shared with their best interests in mind, and that associated risks are being mitigated against.”
Professor Michael Thick, chief medical officer and chief clinical information officer with IMS Maxims, believes the public is on board with interoperability. “From the patient perspective, they think it’s all there already,” says Professor Thick, who is chair of Digital Health’s CCIO Industry Network.
That does not mean that there are no more public discussions to be had, however. “Once data is truly interoperable, who holds the patient record? Whose data is it?” he asks.
The centre’s role
Nor does anyone imagine that moving to the next level will be simple. “I think there’s good reason to have optimism,” says Paul Sanders, clinical systems director with Civica. “But there are barriers, including the ability at a local level for trusts to do what they have to do. There are always other priorities, such as coping with the winter crisis.”
He wants trust boards to show “clarity of purpose from the top” and says the benefits will make themselves felt. “The clinical community is desperate to get a better level of interoperability,” he adds.
David Hancock, client engagement director with InterSystems, also takes a measured view. “Has progress been as fast as everyone wants – obviously not,” he says. “But is the momentum in the right direction? Yes it is.”
He supports bottom-up change, believing it is the way to achieve real transformation. “In the past, the NHS has been guilty of trying to do this in a very top-down way,” he says. “There’s still a residual DNA in NHS Digital that you can do this top-down, but you can’t.”
He believes it is important to recognise that different health economies have different end points and priorities, and that there is also huge variability in the capabilities and capacity of staff on the ground. “Saying top-down that you have to do this when you don’t have the staff won’t work,” he adds.
He does believe there is a role for the centre in supporting implementation of FHIR standards, however. He also wants the centre to spread good practice. “When a local health economy solves a problem, how do you share that?” he says. “We should solve it once, locally, then deploy it nationally.”
Hancock sits on the board of INTEROPen, representing techUK, and believes it has an important role to play. “We are absolutely working collaboratively, and I think that the suppliers that are actively engaged in INTEROPen really ‘get’ it. The market needs to realise that quite frankly the cake is big enough to go around but you need to get moving to have the cake. We owe it to patients and to taxpayers to get this right.”
As for Mehrkar, although he is ambitious for INTEROPen and believes it is speeding progress on interoperability, he warns against creating unrealistic expectations.
“This is not something that happens overnight,” he says. Nevertheless he calls on everyone to back the health secretary and be open to sharing information – and working together. “We need to get behind this and really revolutionise the NHS,” he says.
19 November 2018 @ 12:13
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18 November 2018 @ 09:33
Agree – The patient owns their data so How about we trust them to control who sees it, that would be a step in the right direction although I suspect unpopular with many GP’s and those who earn a living from being IG experts :). This and sorting out who will pay for the integration will accelerate progress. The tech businesses are ‘Businesses’ so they won’t be doing it for free. Strategy types and politicians constantly talking about the vision and writing that systems must interoperate into tenders will not deliver interoperability there is no money to fund. Obviously the integration engine suppliers, some mentioned here, will say it all progressing rather well already as joining up what’s there now is their bread and butter. FIHR looks promising but let’s be honest there is a real lack of traction.
18 November 2018 @ 00:09
I was in the process of replying to this comment posted by Brendan, when the server went down. When I came back to rely to it later, the comment had disappeared, so I am copying it from the e-mail notification I received and posting it on Brendan’s behalf, in order to reply. I hope that is alright with you Brendan?
“Once data is truly interoperable, who holds the patient record? Whose data is it?”. A very valid question and in my view, it is the patient and certainly not any vendor or provider. The patient may assign permanent or temporary rights to use all or part of their data to one or more research, commercial or other healthcare organizations or charities and probably via an independent trusted platform provider designed to do this, and nothing else. The volume of data held by the NHS for any patient is likely to be dwarfed by the data patients gather themselves via a growing range of devices, apps, and non-NHS health and lifestyle services. I suspect the ‘digital tail’ will soon be dictating the answer to the ‘NHS dog’ and re-setting patient expectations as to what they expect in return for NHS-data exclusivity.
18 November 2018 @ 00:12
I would say that you are a little over-optimistic, Brendan. Direct care is only the pretext for open season on patient level data, a commodity of which the DHSC/NHS is absolutely determined to seize complete control, for its own trading and other purposes, with complete disregard both for the rights, freedoms and legitimate interests of the patient/data subject, and with complete disregard for the law. They will do this with impunity, because your NHS dog is actually a hyena, and knows full well that anyone trying to exercise their legal right to judicial remedy will find that any solicitors specializing in this area of law will already be working for the NHS as their main client. Therefore representing anyone against the NHS will involve a conflict of interests. They will not offend their main client (unless the patient is very very wealthy, and in that case, why would they bother with the NHS?). Please, someone prove me wrong. Any solicitor able and willing to take on the NHS, please make me an offer. I am completely serious; the NHS is routinely contravening the GDPR on an industrial scale. Try to tell them that and they are resolutely deaf.
“Les malheurs particuliers font le bien général, de sorte que plus il y a de malheurs particuliers, et plus tout est bien.”
Michael John Miller
17 November 2018 @ 13:15
50 years since Dr. larry Weeds paper “Medical Records that Guide and Teach” the genesis of the EMR.
£ Billions spent and no HIMMS Level 7 Hospital in England?
So what have the likes of Kevin Jarrold and NHS Digital been doing? Where did all the money go? Why are patients still suffering as a result.
Corruption or incompetence?
19 November 2018 @ 21:19
Not “corruption or incompetence”, but cultural hang-ups:
1. The theory that data sharing is dangerous, evil and against the Hippocratic oath. Better in the last few years.
2. NHS people live in hermetically sealed boxes, so that hospital doctors, GPs , IT people, and managers seldom talk to each other. So, IT stops at the surgery or hospital gate.
3. Any attempt to build networks or middleware have fouled up, or have been too small in scale.
4. Clinicians’ fear that IT will threaten the way they have worked since the 19th century.
5. Top-down DoH initiatives have been crude, poorly thought-out, or have stumbled at the first hurdle. So, “bottom-up” rules OK; a recipe for fragmentation and stagnation.
6. The top has never had the cojones to mandate anything. As a result, hospitals put up two fingers to any demand from the centre.
Anybody with any IT experience outside the NHS – even geriatrics like me- realises these things. Hancock has such experience. He may be the first Sec of State to change the culture and implement interoperability.
20 November 2018 @ 00:43
“Hancock has such experience. He may be the first Sec of State to change the culture and implement interoperability.”
Heaven help us if Hancock realizes his ambitions.
And I dispute a number of your points, including:
1.What is dangerous, evil, illegal and against the Hippocratic oath, is recognizing that they should allow patients to opt out, pretending to allow them to opt out while (illegally) ignoring, (illegally) overruling opt-outs, or lying about anonymisation in order to (illegally) circumvent these phony opt-outs. Wantonly destroying trust is dangerous and evil and against the Hippocratic oath, because effective healthcare requires trust.
5. I agree that “Top-down DoH initiatives have been crude, poorly thought-out, or have stumbled at the first hurdle”, and done immeasurable damage. I do not agree that the DoH have learnt any lessons. Again they recognize that they should stop, pretend to stop but carry right on trying to control everything with “top-down” diktats, backed up by punitive measures meted out to anyone who does not comply.
6. As a result, hospitals comply, even when they know that what they are doing is both unethical and in contravention of data protection law. I have lost count of how many times I have been told “We are fully compliant”, or “We are fully committed to working within the framework set up by the Government”. There are both carrots and sticks to ensure compliance with the diktats of the bullies rather than with ethical imperatives or with the law.
The ugly culture of bullying and duplicity (and deafness) that emanates from the DoH is seeping into every part of the NHS. If you comply, you lie. If patients want to share their personal data, that is fine. If they don’t it is not fine.
15 November 2018 @ 16:38
Amir Mehrkar and the INTEROpen team have been a breath of fresh EHR in this space.
They have got on with this work, which is really important but not glamorous or well-rewarded, and have been far more productive than P**B , and guess what, we have actually been able to implement the INTEROpen work e.g. FHIR specs.
I hope NHSD allows projects to be able to procure services in a more granular way, so that people concentrate on the work rather than showboating.
(There are also unpleasant rumours about sub-optimal transparency wrt finances and the relationship between RCP and PRSB – it would be great if Digital Health could put these to rest)
15 November 2018 @ 22:02
Many thanks for the comment.
It’s great to hear the work is being appreciated AND it’s you are inpmenting.
Michael John Miller
18 November 2018 @ 02:07
So how are London Ambulance doing with LHCRE?
For example how are you bringing pathology results data together – the atlas of variation in diagnostics et al?
SNOMED CT Subset for Ambulances complete for 2020?
Seems to me to be business as usual? When will London have fully unified patient records?
Einstein said the difference between genius and stupidity is that genius has limits. Please publish the INTEROpen Architecture for unified health records for London?
Where is the LHCRE money going and to whom?
19 November 2018 @ 20:41
Did you go to the INTEROPen Hackathon last week?
Some good candidates for unified health records or at the very least the start of one
19 November 2018 @ 21:26
Its a view. Not one based in fact I fear. So where did all the money go?
14 November 2018 @ 15:39
” “From the patient perspective, they think it’s all there already,” says Professor Thick, who is chair of Digital Health’s CCIO Industry Network.”
Excuse me, Professor Thick, this is not what “they” think.
Since when is someone representing the interests of industry the right person to speak for NHS patients? The stakeholders whose views are presented in this article do not include patients. The view of all acknowledged stakeholders is that patients don’t count. They are just the raw material, or livestock, and have to be “educated”. For “educated” read “coerced and lied to”. What they think or want is totally irrelevant. The meat industry does not spend time considering what cattle think about being eaten – that would be manifestly ridiculous.
16 November 2018 @ 12:35
As a patient, I am only too aware that interoperability is not here already. My GP and one of my local hospitals, Hospital G do send path reports seamlessly to each other. Another local hospital which treats me for most of my “multiple co-morbidities”, Hospital H, does not. That means that my EMIS patient record does not include hospital H’s records, and is, therefore, positively misleading. I a am victim of “partial interoperability”,
This 15 years after what was laughingly called “Connecting for Health” promised “to move the National Health Service (NHS) in England towards a single, centrally-mandated electronic care record for patients and to connect 30,000 general practitioners to 300 hospitals, providing secure and audited access to these records “! What have all the NHS interop gurus been doing all these years? Faffing about.
16 November 2018 @ 15:51
I became particularly angry in the early years of Connecting for Health, when little effort was was put into interoperability, at a time when massive achievements were being made in connectivity in other sectors.
In the1980s, Tim Berners Lee had almost single-handed made the world accept the HTML interoperabilty standard and the world wide web in about two years flat.
At he same time, a group of procurement nerds, mostly British, had pushed most of industry into Electronic Data Interchange, and even created a global data standard called EDIFACT (EDI for Administration and Transport). Even the NHS adopted this standard for procuring stuff. A small middleware industry grew up overnight, to bring about “end-to-end connectivity'”. (Topically, this technology became one of the building blocks of “just-in-time supply chains”, which Brexiters are now desperate to dismantle, and thereby cause 10-mile tailbacks on the M20 from Dover!)
Thus, Connecting for Health emerged at the same time as the Golden Age of connectivity, and took not a blind bit of notice. The WWW, EDIFACT and SNOMED went global, but the NHS failed to learn enough from them to create a standard for one industry on a small island. Only in the last three years have some relatively longsighted people started to get their heads round interoperability. The trouble is that a decade of “bottom-up” thinking has created total fragmentation. It may be too late.
Also in the 1980s the medical world adopted (to some extent) Read Codes for clinical coding. This morfed into the American standard SNOMED.