When Laurie Hendren found out she had breast cancer in 2014, she wanted to learn everything she could about her condition, but she soon realized how hard it is for patients to access their own medical information.
The McGill University computer science professor, who had dedicated her career to research and sharing knowledge, shared her intense frustration with her radiation oncologist, Dr. Tarek Hijal. That led to the two collaborating on the development of an online patient portal called Opal.
The app — which gives patients access to their lab results, doctors’ notes and treatment plans, and tracks medical appointments — has just won a prestigious medical award, the Prix d’excellence, from Quebec’s Health Ministry.
But Hendren never saw that happen. She died last week, at age 60, just a few days before the award ceremony.
Opal’s latest prize brings some comfort to Hendren’s husband, fellow McGill computer science Prof. Prakash Panangaden.
“It’s very uplifting,” Panangaden told CBC.
“Both she and I are rationalists; we don’t believe in supernatural entities and the afterlife…. To me, it’s a sign that she’s still living, in some sense. Her impact is still there.”
Panangaden said because his wife was a scientist, the first thing she did after receiving her diagnosis was calculate her odds of surviving.
They felt optimistic in the early stages, he said, and “she was incredibly brave through the whole process.”
Hendren would go to medical appointments armed with scientific papers, studies on the latest treatments and deep, probing questions about her prognosis.
“I knew right away what kind of patient — what kind of collaborator — I would be dealing with,” said Hijal, the director of radiation oncology at the McGill University Health Centre (MUHC), who brought in an MUHC medical physicist, John Kildea, and other experts from the hospital to help develop the portal.
“The dissemination of knowledge was very important to her,” said her husband.
“She took up the mantle of pushing this Opal project because she understood how it would benefit other patients,” said Panangaden. “It became something that sustained her.”
A scientist dedicated to education
Hendren was a distinguished scientist — the Canada Research Chair in compiler tools and techniques, a fellow of the Royal Society of Canada and the 2019 recipient of the Dahl-Nygaard prize — one of the most prestigious awards in computer science.
She felt like she should be an equal, informed participant in the discussions about her treatment plans and the analysis of the data, Panangaden said.
She was a woman who would solve problems rather than complain about them, he said, and she brought her McGill students to help with the project.
Panangaden said his wife was constantly faced with long wait times, unsure when her turn would come. The app will help make the wait time more bearable as the patient won’t be locked into a waiting room chair.
“Patients can, when they are in the waiting room, use the app to check in, and the doctors just call them using the screens and notifications on the phone,” said Hijal.
That way patients can use the washroom or grab a coffee while they wait, knowing they won’t miss a waiting room announcement that it is their turn.
“There is education material that is personalized and tailored to the type of treatment they are getting and to their diagnosis,” said Hijal.
Through Opal, patients can see their updated blood results first thing in the morning.
Patients can also see their physicians’ notes, and soon they will be able to access their scans and radiology reports, Hijal said.
The app also allows doctors to send patients short questionnaires about their symptoms before they see them, to help doctors prepare for their visit in advance.
Demystifying cancer’s uncertainty
“One of the scariest things when you’re being treated is uncertainty,” said Panangaden.
And while not everybody has the knowledge to understand all the “scary” medical information the app provides, he said, “at least it helps to fight against the uncertainty — the unknown of what is going to happen to you.”
That helps many patients psychologically, he said.
The MUHC’s Cedars Cancer Centre is already using Opal, and five other hospitals in Quebec plan to adopt it shortly.