MONTREAL—The developer of Quebec’s leading patient care smartphone app is creating a charitable organization to try to get it back online after some 7,000 patients lost access to their medical data when it was shut down earlier this month.

John Kildea, who leads the research team behind the Opal app used at McGill University Health Centre’s (MUHC), said his goal is to compete with for-profit patient data companies—including Epic Systems, the U.S.-based patient software company that the Quebec government selected to build out its digital records project. 

Earlier this month, roughly 7,000 patients at the MUHC, one of the province’s largest hospitals, found themselves locked out of Opal, which gives real time access to lab results, medical notes and treatment plans. About 5,000 of those affected are patients of the Cedars Cancer Centre.

Kildea said he was forced to shut the app down after the MUHC failed to secure further funding, which ended on Dec. 31, 2024. “Without further funding and a mandate from the hospital to continue supporting it as a clinical tool, we could not take on the responsibility of doing so,” Kildea said.

The app’s patient management system, which is separate from the medical data system, is still operational at the hospital’s Cedars Cancer Centre.

Introduced in 2018, Opal was the first app in Quebec to provide patients access to their health data, and remains the sole platform offering this service in the province. The majority of Opal clients are patients at the MUHC’s Cedars Cancer Centre. Colleen Mannitt, who was diagnosed with stage four colorectal cancer in 2020, said Opal allowed her to monitor her own cancer markers and keep track of her appointments. “I don’t want to lose that sense of empowerment and control over my situation,” she said.

Opal is based on an open-source platform. The Opal Health Informatics Group (OHIG), the research body behind the app, plans on releasing its source code to the public by March, Kildea said. 

The app, which received a $10-million innovation grant from the Quebec government in 2021, costs $500,000 a year to run. Kildea said he warned the hospital in 2023 that the Opal app would run out of funds by the following June, though he was able to pull research funds from other areas to keep Opal online until the end of the year. 

The MUHC said an interim replacement for Opal will be available in the coming months, according to a December email to Opal clients from MUHC director Keith Woolrich and Cedars Cancer Centre director Armen Aprikian. The hospital will ultimately adopt a permanent solution once it receives “authorization to roll out the provincial electronic medical record,” reads the letter which The Logic obtained.

“Unfortunately the initial hope for the Opal portal to be a stable clinical solution and commercially available did not materialize, and over the past several years, the MUHC and the research team discussed on multiple occasions that Opal would not be viable once the funding ended,” said MUHC spokesperson Bianca Ledoux-Cancilla. The hospital wouldn’t say when it would implement Opal’s interim replacement.

In September 2023, Quebec health minister Christian Dubé announced its selection of Epic Systems to lead its 15-year, $1.5-billion digital health transformation. The provincial government expects the long-delayed initiative to complete the first phase of the digitalization effort by the end of the year. 

The researchers behind Opal are now in the process of setting up the non-profit Opal Foundation “to keep Opal going and make sure it can compete with the big American companies,” Kildea said. The group has consulted with the OpenEMR Foundation, which supports the OpenEMR open-source medical practice management software. “We have built something special with Opal. There are no open source vendor agnostic portals out there. Opal can change that,” Kildea said.