By Teri Price
Teri Price is a Patient Safety Champion Award winner and member of Patients for Patients Safety Canada. She also volunteers with the IMAGINE Citizens Collaborating for Health organization, to find out more about their work go to Imaginecitizens.ca. Greg's family has established a not-for-profit organization in his honour called Greg's Wings. To learn more about Greg's story go to healtharrows.ca.
"Some men see things as they are and say why. I dream things that never were and say why not." – George Bernard Shaw
My brother Greg loved to challenge the status quo. He believed that thinking outside the box and from different perspectives can lead to positive change and innovation. Greg was an engineer and entrepreneur. He was an intelligent and driven person who was healthy and active.
My brother Greg died on May 19, 2012. He had testicular cancer. A cancer that has a 96-99 per cent survival rate. For Greg, the mass in the back of his abdomen put pressure on his Inferior Vena Cava (IVC). Greg died of a blood clot.
Our health system failed Greg in many ways. Too much time passed where he was left uninformed, and unaware of what was happening and in several instances, nothing was happening.
Recently I had the opportunity to hear Zayna Khayat, (Senior Advisor, Health System Innovation and Director, MaRS EXCITE) present on the "Future of Health" and she described how patients in the future would have all their health information in their own hands and predicted that doctors of the future would be the ones subscribing to their patient's information.
This would be a powerful shift.
Patients deserve to be partners in their care in whatever way works for them. They are the only one consistently present when they are required to move though the health system. Wouldn't it make sense to enable them to be keepers and sharers of their own health information? I believe digital health is going to change how we track our own information, how we interact with our care providers, how we share information and it will enable us to contribute to our own health records.
Movements like OpenNotes have demonstrated the benefits that result from giving patients access to their doctor's notes and has been successful at shifting the mindset of participating physicians. This is beneficial because:
Patients remember less than half of what they discuss with their healthcare provider. Having access to notes provides the opportunity for patients to review important information at any time.
Information is power. Reading notes can enable a patient to feel more confident, prepared and in control. Having access to health information can lead to better questions, more confident decisions, and builds trust.
Patients can choose to share information with family members or health professionals beyond their regular care team on their own terms.
Having access to notes can make healthcare safer. When patients can review information, they identify mistakes and ensure accuracy.
So what is stopping us from getting to the place Zayna described, where the patient has all of their health information in their hands? Paternalistic culture? Misconceptions of the risks and benefits? Canada Health Infoway has recently released a valuable series of Digital Health Myths that debunk the reasons that are often used to limit digital health implementation. Technology isn't the barrier. The digital health industry is exploding and I am excited and optimistic about what ideas and innovations are happening. It's time to say 'why not', it's time to admit there are no more excuses, it's time to make the change and enable patients to access and contribute to their health information.