An award-winning app that helps patients at the MUHC manage their treatment is no longer available because of a lack of funding.
It was considered groundbreaking — patients who relied on it to track their appointments and lab results have been left with very few answers.
This used to the be the way Danielle Duguay tracked her chemo treatments, but when she opened up the opal application this week she got a message saying the app was no longer available.
“I was like, ‘this is the dumbest thing ever,’” she said.
Opal was developed by a team at the MUHC so cancer patients could track their appointments and get their lab results on their smartphones.
For Duguay, who has received over one hundred chemo sessions in the past eight years, it was the best way to stay on top of her treatment.
“All of the treatments at the cancer centre are in the app in order. It sends you a push notification 24 hours before so you’re like ‘oh, that’s great,’ because you will forget sometimes,” she said.
In 2019, the app won an award from the Quebec government for innovation.
Back then, Opal developer John Kildea hoped it would be adopted province wide. But now Kildea said the research project is over and the money has run out.
“Without funding and without the support to keep it going. We’re not able to keep going, unfortunately,” he said.
Patients ‘not happy at all’
Opal was being funded by the provincial government and hospital foundations. The MUHC says it is looking into a larger patient portal like Opal but it needs a commercial solution, which it didn’t have in time.
The hospital’s patient committee told CTV Opal had incredible feedback from about 7,000 patients over the past six years and users had less than a month’s warning before it ended.
Deborah Radcliffe-Branch from the MUHC patients committee says the Opal app was inspired by former McGill computer science professor Laurie Hendren’s battle with breast cancer.
“As she went through treatment, she knew what was deficient in the system and really came up with tools that cancer patients need,” she said.
“So, it does things like remind you of your appointments. It keeps track of for instance, radiation, how many radiation sessions you’ve had so that when you go and see another clinician and they ask you, well, how many radiation treatments did you have? It’s all there on your phone.”
Hendren died in 2019.
She adds that patients were only alerted on Dec. 9 that Opal wouldn’t be in operation as of Dec. 31.
“The MUHC decided not to fund it, and patients received a notice on Dec. 9 saying that Opal would be discontinued, and the replacement would be chosen,” she said.
“That was about six weeks ago and we have no news, and there was no date on when it would be replaced. Given the highly specific nature of the program I’m not sure that it can be easily replaced, to tell you the truth,” she added.
“Patients are not happy. Not happy at all.”
Potential for new portal
The MUHC’s director of innovation, quality and performance, Dr. Alan Foster, said the hospital is looking into creating a wider patient portal.
When asked why not continue to use Opal in the meantime, he answered, “the main issue would be funding and ensuring that the program works. In this case the research funding ended. So for them (the developer), they need to identify a mechanism by which they can be supported.”
He added the hospital has been in discussion with the newly created Santé Québec about a similar program to be used by patients.
“Patient portals are very important tool and having access to patient information is very important for them. The Opal solution was designed as a research project for small number of patients.”
Kildea told CTV he would like to continue the program but hadn’t received a funding commitment from the hospital or the provincial government.
“I’m a professor at McGill. My area of expertise is in doing research, doing development, doing innovation,” he said. “We would be delighted to continue doing that with Opal. Whether it is used in a hospital context or not is the prerogative of the hospital to decide.”
The Opal app was initially conceived in 2014 but only launched in 2018. Kildare says its received funding from the MUHC Foundation, the Montreal Children’s Hospital Foundation and the Montreal General Hospital Foundation as well as from Quebec’s Ministry of Economy, Innovation and Energy.
“It was really discontinued very abruptly and with no explanation given, really. So patients were just left with nothing,” said Radcliffe-Branch.
Duguay says she misses the ability to check her results with one tap.
“It also is just empowering you. You know what’s going on with your body. This is my information. It’s my treatment. It’s my journey. I should have access to it,” she said.
Duguay now has to keep a paper trail of her appointments and results when she wishes opal was being expanded to other patients instead of ending.
