In a Quebec first, a child’s medical info is just a click away

Preparing for a child’s doctor appointment can be nerve-wracking at the best of times. For parents of children with serious or chronic ailments, it is particularly challenging. They have an enormous amount to manage including their child’s appointments, treatment plans, medications, clinical notes, and lab test results. To make it easier for parents to track, share and understand their child's medical history, the Children’s is launching a pilot project to deploy the award-winning Opal patient portal app (opalmedapps.com) in its Nephrology Department.

Opal Patient Portal App Empowers Parents and Patients

“The Opal app will be fantastic for our young patients and their families,” says Dr. Bethany Foster, Medical Director of Pediatric Nephrology. “The children in our care require many, many lab tests; understandably their parents are anxious for the results. With Opal, test results will be a tap away, which will help to reduce anxiety. A nurse currently dedicated to calling patients and fielding their calls about test results will be able to spend more time on patient care, and parents will be able to better prepare questions for upcoming appointments. Opal will also provide families with educational material designed to help them manage their child’s condition. They can read or consult the material in Opal at their leisure.”

“The Opal app, which is accessible by smartphone, tablet and computer, was designed to make communication and information sharing easy and secure. With Opal, parents can provide their child’s entire medical team including doctors at the Children’s, at other institutions, in the community, or at their child’s school with the most up-to-date information about their health status," says Dr. John Kildea who leads the RI-MUHC’s Opal Health Informatics Group.

Opal allows parents to securely:

• Access their child’s appointment calendar and receive automated appointment reminders,
• Check-in for their appointments upon arrival at the Children’s and be notified when it is their turn (the app is GPS-enabled so parents don’t need to stay in the waiting room),
• Track and access their child’s medical records – such as lab results, and other critical medical information,
• Read physician notes and treatment recommendations,
• Learn about their child’s diagnosis and treatment plans thanks to educational materials sent at specific phases of treatment,
• Actively participate in their child’s care through questionnaires and other feedback mechanisms,
• More easily take part in research studies,
• …additional functionalities will be added based on parent/patient feedback

The Opal App Created with Children like Naelie in Mind

“My daughter Naelie was diagnosed with focal segmental glomerulo sclerosis at age 2.5. As the parent of a sick child, I have to stay on top of things. I had to learn about her diagnosis and symptoms; keep track of appointments and test results,” says Naelie’s mom, Karine Fournier. “In 2017, Naelie’s kidneys failed; she needed two types of dialysis and eventually a kidney transplant. Her dad and I were constantly repeating our daughter’s medical history to health providers. After the transplant, there were complications, and we had to keep track of everything. If she spiked a fever, we had to know what to do, including when to rush to the ER. It was a stressful year. I am happy the Children’s is rolling out Opal. It will be incredibly helpful for parents at the Children’s. I look forward to using it.”

Donations Made the Opal App Possible

“Thanks to the financial support of our generous donors, including a major corporate donor, to date, the Children’s Foundation has raised $1,575,000 for Opal. Without donations, the app would not be available at the Children’s,” explains Renée Vézina, President, of the Foundation. “I thank the Foundation’s supporters for funding Opal, which will simplify and streamline the health care journey for our patients. You are helping us find unexpected ways to heal.”

Made at the RI-MUHC

The Opal Health Informatics Group, at the RI-MUHC, created and continues to develop the award-winning Opal patient portal app. To build Opal, the research team followed a “stakeholder co-design approach” and involved patients, clinicians, IT experts, and other healthcare professionals in the design process. The result is an app that is very patient-centered and easy to use. Opal is currently deployed at the Cedars Cancer Centre where patients report that it helps reduce their anxiety and enables them to better manage their care. The Opal Health Informatics Group’s goal is to connect all Quebec patients with their medical information to make the healthcare experience less painful and to involve patients directly in research initiatives. Opal was born out of a patient-centered research project and it continues to have patients and research at its core.