Letter study aims to engage and empower patients

Pediatric respiratory medicine in the Department of Pediatrics

Dr. Israel Amirav and Laura Saunders
As a physician in his home country of Israel, Israel Amirav was accustomed to sharing in writing the details of each medical appointment with the families of the young patients he treated for asthma and other respiratory conditions.
Upon his arrival in Edmonton five years ago, Amirav was surprised to learn that no such practice existed here. So, the physician and professor of pediatric respiratory medicine embarked on his EMR (Electronic Medical Record) Letters Study in 2016. His purpose was twofold: to show doctors that empowering their patients in a two-way dialogue about their health is good for everyone, and to educate patients on their rights to participate in that dialogue.
For about a year, the 60 participating families left every appointment with a letter about their child’s condition and medical history, then completed a survey about the experience, created by an advisory panel that comprised of both parents and researchers.
Laura Saunders, a parent participant in the advisory group, helped craft this survey and she can’t say enough about how the experience has empowered her to take a more active role in her family’s healthcare journey.
Now, if a doctor declines to share written information with her–something she now requests every time–I’ll take my own notes,” she said, “or I’ll record our appointment.” It’s also inspired her to spread the word wherever she goes that all patients should embrace the opportunity to be active and full participants in their health care. “As a parent, especially, it’s your right and your responsibility,” she said.
While Amirav and his team are still analyzing the study results, he would ultimately like to see a policy shift that requires all doctors to provide their patients with written records at the end of each visit. For this to happen, decision makers at the very top of the system need to take action, and that, he said, will be driven by enough patients demanding it. The overwhelmingly positive response of the families in his study, he said, and of people like Saunders, gives him hope. “This is a message we should be sharing,” he said. “It doesn’t cost anything, and it’s so simple.”
Analysis of the letter study was supported through the WCHRI data coordinating centre and study management team, funded by the Stollery Children’s Hospital Foundation.