A quick Internet search for the term “Personal Health Data” shows it is a hot topic. It also shows that it is a topic of heated debates. Personal health data may contain details of prescriptions, genetic testing, hospital admissions, and even addiction treatments. Fearing to be left in the dark about where it will be stored or what it will be used for, patients are often apprehensive about sharing this information. At the same time, a growing number emphasize the meaningful advances we can realize when sharing and connecting data points. This may be the dawn of a new era in healthcare. One example for a purposeful, collaborative and transparent approach to data sharing is the Quebec SmartCare Consortium’s Opal platform.
It all started when (the late) Prof. Laurie Hendren, professor of Computer Science at McGill University, was diagnosed with cancer, and struggled with getting access to her own health data - meticulous procedures for requesting the information, lengthy processing times, and files that were often cryptic or impossible to understand for the non-clinical reader. She shared her experience with clinician Dr. Tarek Hijal and researcher Dr. John Kildea, and the three decided to collaborate to challenge the status quo - the founding moment of the Opal Health Informatics Group at the Research Institute of the McGill University Health Centre (RI-MUHC). Even after Prof. Hendren’s passing in 2019, the group pressed on to realize her legacy and, in 2021, formed the Quebec SmartCare Consortium, bringing in diverse public and private partners.
Today, the Quebec SmartCare Consortium is a multi-stakeholder initiative with the goal of nothing less than transforming healthcare. Traditionally, patients may not have sufficient details and context to really understand their health data. Other times, they may struggle with the overwhelming amount of general information available regarding diseases and treatment options. Making their data available for clinical studies or research would often involve very passive, dated processes. With the digital health platform Opal at its core, the Quebec SmartCart Consortium bridges this gap, and empowers patients with personalized information and easy access to their health data - enabling them to make more active, informed decisions.
Via the digital app, patients can report symptoms or observations directly to their physicians. With this information, physicians have a more realistic grasp of how their patients are doing and are able to respond in a timely manner. Patients can also use the app to access information regarding their diagnosis and treatments, as well as personalized educational material. Enabled through the Quebec SmartCare Consortium’s work, patients will soon have full control to make informed decisions (directly in the app) about what data they want to share with whom, and which studies to participate in - reducing some of the unknown and anxiety around personal health data. Beyond empowering patients, this can also contribute to better health solutions overall: Based on the information that patients decide to share, scientists and researchers attain deeper insight into the efficacy, side effects and outcomes of treatments, helping them develop new medical advances, faster.
Opal represents a triple win: benefits for patients, clinicians, and the health system as a whole. At Roche, we believe that mutual benefit and collaboration of all stakeholders are needed to tackle the healthcare challenges of our times. Constantly on the lookout for new opportunities to collaborate in meaningful ways, Roche is proud to be a partner of the Quebec SmartCare Consortium. As a collective, we can have an impact that no one partner would be able to have on their own. Together, we are steps closer to realizing the bold vision of the Quebec SmartCare Consortium: Demonstrate the efficiency of a solution to digitize all healthcare interactions over the next three years, and, by 2030, make all personal healthcare data accessible to patients across Quebec.
Want to read another powerful example of how data can help save lives, head over to the story corner on Roche.com.