Open clinical data the first step towards open innovation

In March 2014, the University of Canberra officially opened a new building on its campus called the Health Hub, a $15 million facility designed as a new way to integrate teaching, training and research for better healthcare.

The Health Hub includes a full-service general practice super clinic run by Ochre Health, a pharmacy, a pathology lab, medical imaging and a range of student-led allied health services such as physiotherapy, exercise physiology, psychology, midwifery and nutrition and dietetics where the university's health science students can get some hands-on experience with real patients.

The facility also includes an eHealth laboratory called the Living Lab, run by National ICT Australia (NICTA) and designed to allow researchers, small businesses and clinicians to collaborate on co-designing, co-developing and co-deploying eHealth solutions in a practical clinical environment.

According to the Living Lab's technical director, NICTA's Leif Hanlen, one of the benefits of locating the Health Hub in a town like Canberra is that within a 10 or 15-minute drive, there is also another major university in ANU, Calvary's public and private hospitals, an aged care facility and even the Australian Institute of Sport.

As Dr Hanlen told the eHealth Interoperability Conference in Sydney recently, that almost encompasses all of the moving parts of the health system. “We’ve got community all the way through to tertiary care within walking distance,” he said. “So with that in mind, we are effectively taking students and explaining to them how ICT is part of the oxygen of healthcare delivery, rather than something strange and different.”

Through the Living Lab, NICTA is also testing out a different way of thinking about sharing clinical data. Dr Hanlen believes that the days of keeping data within the confines of a closed system or a research team – the “keep it secret, keep it safe” approach – are over.

“We need to open up a community of innovators beyond the people who are already members of the clergy, so we have to assume this sharing will happen,” he said.

“And once you assume it’s going to happen, then you will build the infrastructure to meet that challenge. You don’t build bigger and better firewalls: you build data management structures that let the sharing happen without damaging your privacy constraints.”

At the Canberra Health Hub, NICTA is working on a number of projects to develop and deploy new technologies, or working with existing technologies, that can have a practical, immediate application.

These include the free SNOMED encoding that NICTA offers through a web service that is being evaluated and deployed through ACT Health for discharge summary management, as well as work on hospital infection control by using data analysis of existing clinical reports to work out which sections of the hospital are likely to prove a problem.

It is also working on using voice recognition technology for nursing handover notes that can transcribe a handover note, classify it and and insert it into the Cerner hospital information system.

It is also investigating introducing NICTA's existing WebRTC-based telepresence platform to the medical and allied health clinics in the facility, as well as developing an integrated mHealth model for primary care using tablet devices.

This is being applied to patients with type 2 diabetes attending the super clinic but it has taken a different approach to mobile health, Dr Hanlen said.

“What we did was a bit different. We said, see this [smartphone]? It's not a health device but you seem to be using it a lot for your health data, so why don’t we just clip on to that. So we gave the patients iPads.

“But what we did was we put in the the back of the iPad a series of apps that are off the shelf and we said to the patients, use whatever you want, do whatever you want, share with whoever you want. Just tell us.”

This led to one patient, a 60-year-old, who demanded to know why she could use the iPad and apps for her chronic disease management, but she couldn't use it for her prescriptions when she attended the pharmacy in the same building.

“The difference here is that suddenly the patient has seen the benefit, she knows what she wants and she walks up to the clinician and says, why can’t you make it work? Well he can’t, but what he can do it and what he did is come to people like me and say, 'I really need those e-records and I need them now, and I need them to look like this, because she wants one like that. Let’s build it.”

Now, NICTA is working on developing a handheld EHR that will allow patients to store their encrypted data on their phone and share it with whoever they like.

“Mobile health is probably one of the most overhyped areas that there is, but the fact is people will start delivering mobile care,” he said. “They presume that people will have a device, they will use whatever they use, and they don’t physically have to download something to play … or log into some remote server through a series of public/private tests. They simply whack their stuff up there and they expect that you will deal with the consequences afterwards.”

For all of these new technologies to work, the sharing of clinical data is required, but that sharing must be done as openly as possible, Dr Hanlen said. He likened the current situation in which data is fiercely protected, or if used for a research project is subsequently destroyed, as the 'health IT Hotel California' – “you can put the data in, but it will never leave”.

He said the huge amounts of data generated by healthcare was not manageable without sharing, but one of the barriers to getting anything done is the current procurement process. A problem is identified, a tender document is created, vendors are prohibited from collaborating, and the cheapest option is chosen.

He illustrated this with astronaut Alan Shepard's famous quote: “It's a very sobering feeling to be up in space and realise that one's safety factor was determined by the lowest bidder on a government contract.”

“I would argue that the IT procurement in health is exactly the same and your health safety factor rests on the lowest bidder to whatever the current procurement for health IT was,” Dr Hanlen said.

He recommends instead a modified Delphi approach, also championed by New Zealand's National Institute for Health Innovation (NIHI), which involves bringing vendors together and contracting them all to collaborate to fulfil the end-user's requirements, which encourages sharing.

“Be aware that open data, open clinical data, is a gateway,” he said. “It’s no more and no less than a first step in moving towards what you really need, which is open innovation. I want to work with you and then we’ll get something better done that you or I couldn’t have done before.”

Posted in Australian eHealth

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