Cloud based clinical platform brings relief for Inflammatory Bowel Disease (IBD) patients and practitioners

Crohn’s disease and ulcerative colitis are lifelong, chronic and debilitating conditions that affect approximately one in 250 people.

According to Crohn’s Colitis Cure (CCC), an Australian charity focused on improving care and research to IBD patients across Australia and New Zealand, while IBD can be treated, there is as yet no cause identified or cure available for the 75,000 Australians and 15,000 New Zealanders affected. Hospital costs of over $100 million and productivity losses of $380 million per year were estimated in 2012¹ in Australia due to IBD.

There is however hope that IBD treatment can be streamlined and enhanced by a cloud based clinical management platform currently being rolled out to many of the 14 health services making up the Australia New Zealand IBD Consortium (ANZIBDC) and funded by CCC. Each senior gastroenterologist in the ANZIBDC cares for between 400-2,500 patients with IBD. The opportunity to bring this data together to derive insights about the disease and treatment has previously been unavailable. The name of the new system is “Crohn’s Colitis Care”.

Professor Jane Andrews is Acting Director and Head of the IBD Service in the Department of Gastroenterology & Hepatology at The Royal Adelaide Hospital and a Clinical Professor at the School of Medicine at the University of Adelaide. On both the board of CCC and a member of the ANZIBDC, one of the key benefits of the new platform for patients Prof Andrews says is that “with the logic that we’ve built in, we can answer lots of clinically relevant questions very quickly in real time.”

One of the challenges that clinicians face when treating patients with IBD is that they may have been diagnosed 10, 20, 30 – even 40 – years ago. Many patients will, over that time, have moved house, swapped doctors, visited multiple hospitals, and relocated interstate leaving in their wake fractured and incomplete medical records specific to their disease.

As Prof Andrews notes, this means that “we struggle to work out what surgery they’ve had, what their last colonoscopy looked like, what drugs they’ve had in the past, what their blood tests were. “

For treating clinicians, having access to incomplete or inaccurate medical records seriously limits their ability to optimise treatments and orchestrate the right tests for an individual patient.

To try and address the challenge, doctors were creating spreadsheets, databases and trying to use information as best they could.

“But it wasn’t very interactive. We could only record bits of information, we couldn’t use them very well for reporting, and if we wanted to look at outcome reporting across our sites, we would have to combine the data and clean up the data sheets and harmonise things. It was enormously frustrating and took a lot of time,” says Prof Andrews.

Without a central patient information repository, doctors would find themselves juggling 8 or more systems, some on paper, some spreadsheets, some databases. At the same time patients were having to spend a lot of their time filling out forms to provide the information that the doctors needed.

There were additional hurdles for patients on biologic drugs which require PBS funding and which has its own application process; information captured in Crohn’s Colitis Care could be used to expedite this.

Patients can now be confident that their relevant information is available when they call the nurse-run IBD helpline at Royal Adelaide hospital.

Dr Nic Woods, Health Industry Executive & Chief Medical Officer for Microsoft Australia, knows only too well the impact that this disease can have. “Having witnessed a family member endure this disease and the catalogue of life-threatening complications, I am a complete advocate for the approach that Jane and the team have taken to bring this platform into the hands of clinicians and affected patients to positively impact care.”

Practice transformation

Access to the platform has transformed Jane Andrews’ practice which looks after 1,500 IBD patients. “There’s myself and another doctor who is with us part-time. There are two fulltime nurse positions shared by four part-time staff.”

Ease of access to information by whomever needed it is critical.

In the past when a patient called the service their case notes would have to be ordered from wherever they were held, and test results corralled from different hospitals or radiology practices. “With Crohn’s Colitis Care, as results come in we load them up, if they call the helpline, it is all in front of the person who answers the phone,” says Andrews.

“From a patient point of view, they can be confident that all their information, regardless of the source, can be loaded into the one solution.” As long as there’s an internet connection the comprehensive record is available and can be used to guide decisions about the best treatment options.

When patients see Crohn’s Colitis Care in action, Andrews says that they can see their timeline, and colour bars denoting which drugs they are on. “I think it’s been a bit empowering for them, actually.

“We want to build on our medication timeline to show, ‘this is remission, this is active disease, this is the hospitalisation, that’s the surgery’ and we want to encourage them that you want as much of the remission bar, and as little of everything else, as possible.”

Currently installed in South Australia’s four teaching hospitals, Andrews expects Crohn’s Colitis Care will be deployed across Australia within a year.

The strong digital foundations of the platform also support plans for a bigger, more interactive patient portal.

“We’ve got a limited patient portal at the moment, where they can tell us how they’re feeling, and whether they’ve got specific concerns. We send them a questionnaire two weeks in advance of their next appointment, and that pops up for us to look at. And if they look unwell on that questionnaire, we can call them back rather than waiting for them to arrive in two weeks feeling worse,” says Andrews.

She is also optimistic about the opportunity to infuse more intelligence across the platform.

“We could have another button that comes up and says ‘if you use this dose beyond this number of days, you know that the person is immunosuppressed and you should also do X, Y and Z, and you should get a bone density done.

“We have a button in there already that if we’re going to prescribe specific high-level immunosuppressant drugs, it pops up and says ‘have you done the pre-screening’, and pre-screening for this drug includes a chest X-ray, excluding TB, excluding Hep B and a few other things.

“We can have a lot more guidance algorithms in there as we become comfortable with the system, and as we all agree to what the algorithm should look like.”

Andrews also expects that Crohn’s Colitis Care will deliver greater transparency regarding drug (cost) efficacy by providing more comprehensive and granular insights about clinical impact.

A better solution

Initially the clinicians believed that what they needed was some form of comprehensive database or registry to house patient information. But they rapidly realised that a cloud based clinical management platform would confer all the benefits of a consolidated database, and offer important additional functionality.

Andrews explains; “We know that in most medical management for inflammatory bowel disease, concentrating on the basic simple stuff and doing repetitive tasks reliably and well, provides bigger gains than if you do the “shiny” stuff well occasionally.

“With a software solution where you’ve got to fill in all the fields, it makes sure that you do look at the haemoglobin, and you do ask about their vaccinations, and you do check whether they’re smoking.”

David Carter is a partner at New Zealand based Stratos Technology Partners, a Christchurch based firm that built Crohn’s Colitis Care and specialises in Microsoft technologies – particularly the Azure and Office 365 stacks. When he saw the tender document for Crohn’s Colitis Care he grasped the scale of the challenge, took a deep breath and a very big risk.

“What they wanted us to do, was to have an on-premise system installed at every site, every hospital and every private practice, which would feed data up into a central database somewhere in the cloud.

“We actually put in a non-conforming tender, because we thought that that was a big risk, in terms of involving so many different hospital IT organisations, and having to coordinate with them on installation and maintenance. We thought a cloud-based approach would be far more scalable, and a lot cheaper to do. So that was our proposal.

“We also thought that just having a simple registry was probably not going to incentivise people to enter information. We thought a large part of this system’s success was going to be to incentivise people to use it… so it became central to their workflow with a patient.

“That’s why the system has morphed from being really just a research registry, to a core part of their clinical management of patients.”

Azure’s secure and trusted foundation

The arrival of Microsoft Azure in Australia coincided with the tender being issued. That ensured that cloud-based data could remain in Australia, overcoming any data sovereignty concerns about the system.

Azure’s reputation as a trusted and resilient cloud platform was very important says Andrews.

“It was clear that if we went with Microsoft Azure, we were going to be safer. Because we knew we were doing something that the hospitals were going to find difficult to approve. We knew we were going to be asking them to consider something left field in terms of coming outside their electronic medical record and going outside the firewall and putting patient data on the cloud.

“So we wanted to make it as safe and as well engineered as possible, and all the advice we got said the same thing. There was a consistent message out there in the IT and health security technology area.”

Carter says the resultant solution; “Is all Azure platform as a service, which has made it a lot easier to get sign-off from the health authorities, because we don’t have any infrastructure to maintain, and the security concerns around that. We’re using Azure SQL Server with Row-Level Security and Data Masking. We’re using a web API to interact with that.”

He pays tribute not just to the technology, but also to the support that STP had throughout the process from Microsoft’s international cloud and health sector experts to ensure the program of works smooth running.

“We’re using an encrypted Azure DB, and all certificates are managed by Azure Key Vault. We’re using Blob Storage likewise, which is all encrypted at rest. All data at rest and in transit is encrypted. We are also using Azure Active Directory to handle the multi-factor authentication of users.”

De-identified clinical data is stored in a separate research database, allowing important longitudinal analysis to be conducted on comprehensive data collections using Power BI and a series of dashboards to interrogate and display results.

Plans are now afoot to leverage Azure Machine Learning to better understand the information in the research database.

Integration with other systems such as electronic medical records, potentially with the MyHealthRecord, and pathology systems is also being considered.

Already though the benefits are clear to Carter; “The clinicians can see all the patient data in one place. They can also have patients enter information before they come into the clinic, which is a big time saving.”

Carter adds that the cloud-based platform is helping to transform its users into data-driven organisations. “We’ve given the clinicians dashboards which show how many patients, what conditions they suffer from and what their demographics are. They can see all that in real time now. This enables the clinicians to build business cases as to why they need funding, because they’ve actually got the data to back up those sorts of decisions. So I think that’s going to have a major impact on how they function.”

He also believes that the solution proves that it is possible to create “health-focussed cloud applications securely, at scale, on a reasonable budget. It’s easier to get compliance sign-off now that the health authorities are starting to understand what cloud means, and how secure it can be.”

If you would like to know more about the work of Crohn’s Colitis Cure, please visit: www.c-c-cure.org.

1. Inflammatory Bowel Disease Updated 2018, Gastroenterological Society of Australia

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