Breaking down the silos: app puts data in the hands of patients

When a professor of computer science became a cancer patient in the Quebec healthcare system, not having access to her own data became a source of pain. The solution? Build an app that puts data in the hands of patients and researchers alike.

In case you missed the memo, modern life is awash in data. Indeed, if you were to print the amount generated each day (estimated to be 2.5 exabytes) in book form and stack them up, you could reach the moon – twice! Information overload – predicted as long ago as 1755 by Denis Diderot – is more than a phrase, it’s a societal condition.

With this in mind, it would be hard to imagine that such a thing as a data deficit could exist in this day and age. But when it comes to healthcare, this is precisely the situation. But hold on, says the millennial with mobile phone in hand. I just downloaded a health-app. Surely this will give me the data I need?

While it’s true there are a multitude of health apps out there – as many as 400,000 according to some sources – they are not all alike in terms of the quality of information they provide. The majority of them border on entertainment, rather than scientific information.

It is against this background that last week’s news of the Quebec SmartCare Consortium signals a new and potentially valuable beacon of light in an increasingly over-informed, data-clogged world. The centrepiece of the consortium is the Opal patient portal, developed by the Opal Health Informatics Group at the RI-MUHC.

Opal is a mobile app that is centred around the patient – which makes it sound like a lot of other apps out there. But what’s different is the access it provides. Dr. John Kildea, principal investigator of the consortium, and co-founder of the Opal Health Informatics Group, explains: “Opal is a platform, not just an app. What makes it unique is it is able to securely get across the data wall that normally exists around hospitals, which are like fortresses in how they guard information.”

Although the announcement of funding for the consortium is recent, the Opal platform has been under development for several years. It began when Professor Laurie Hendren was diagnosed with breast cancer. As a researcher in computer science, she was used to having data at her fingertips. But as a patient in the Quebec health care system, she did not have the same level of data access as she was used to.

“Laurie told us that this lack of data was in itself another pain she had to face,” Kildea said. At the time he was working with Dr. Tarek Hijal, a radiation oncologist at the MUHC, on a project that would help patients check-in for their appointments at the MUHC. With Hendren’s involvement, the project evolved into an attempt to help patients estimate their waiting times.

Although the waiting time estimation project never fully materialized, it did provide a tool that would be useful in other areas: a mobile app to securely communicate with patients from inside the hospital. “Laurie’s contribution as a patient and as a scientist gave us a unique perspective,” explains Hijal. “It helped us imagine something much bigger than what we had conceived at the beginning.” This became the genesis of the Opal patient portal, which went live with its first registered patients in 2018.

The SmartCare Consortium’s strength is in the way it will use Opal to bridge the data gap between patients, researchers, and clinicians, all of whom have a strong interest in the health of the patient. However, the data each of these participants needs to see can vary. In addition, creating a viable ethical framework for handling such potentially sensitive information required the involvement of experts in this field.

“Our experience in handling data policy gave us a special seat at the table,” explained Professor Ma’n Zawati, Executive Director at the Centre of Genomics and Policy. Although the unit is typically focused on handling DNA information, they have been involved in creating policies and processes for the platform.

Central to any data collection for research is the consent of the patient. The new approach to this occasionally thorny issue is what is known as ‘dynamic consent,’ whereby patients can control more precisely what their data is used for and by whom. It also allows them to go back and change their options, all in real-time.

The benefits of the system are shared by all: patients have more control, clinicians gain improved insights into how their patients are doing, and researchers have access to more and richer data. It’s a case where technology is used to level the playing field and re-establish patients not merely as passive receivers of care, but as active partners in their own treatments and in research.

But apart from the ubiquity the platform offers, or the degree of patient involvement, it is also important to appreciate that this is being designed for an unprecedented scale: that of the provincial healthcare network.

Currently, only about 2,000 users are on the Opal platform at the MUHC. But more crucially, the program involves data being shared with other clinics at the MUHC as well as Ste-Justine hospital. It’s an important first step toward the eventual goal of having all patients in Quebec able to access their data via the app by 2030.

On this last point, Kildea was realistic: “Even if it is not the Opal solution that gets adopted, but if as a result of our work, Quebec patients get access to their data, that would be a success,” he summarized.

Another important stakeholder in the mix is industry, who have not only taken notice of the project but are actively contributing to it. Industry leaders Roche and Novartis Pharmaceuticals Canada Inc are both sponsors, and fully appreciate the new landscape that the Opal platform can provide. Their support will help guide the creation of data standards.

Professor Yann Joly, Research Director at the Centre of Genomics and Policy commented: “The fact that you are using such a platform to share data between industry and the hospitals is an enormous step. It’s the first attempt to do this on such a scale, especially in Quebec.”

Also within the mix are another potentially important source of data: wearable devices. Already nearly as ubiquitous as mobile phones, with an estimated 722 million users worldwide, these devices can provide real-time information to clinicians. Particularly in late-stage cancer therapies, having access to a patient’s vital signs can be crucial. Bundling this information together through a single interface is more than merely convenient – it could be absolutely lifesaving.

Although Professor Hendren eventually succumbed to cancer in 2019, one cannot help but feel that had she seen this dramatic and coordinated movement of so many diverse but essential players across the healthcare sector, she would have approved. Her legacy of fighting to put data in the hands of patients lives on.

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