My brother recently underwent a double lung transplant surgery at Toronto General Hospital’s Lung Transplant Clinic, one of the best lung transplant programs in the world, and it was a success! Part of what made his surgery so successful was the seamless collaboration between his care team, including respirologists, thoracic surgeons, anesthesiologists, nurse practitioners, pharmacists, physiotherapists, dieticians and others. A double lung transplant is a prime example of “complex care”—that is, care that is delivered by multiple specialists in different institutions, requiring extensive medication, therapy programs and aftercare.
My brother moved to Toronto for the surgery. Post-surgery I was amazed that he was able to breathe on his own and that he was walking within a few days. What followed was an extensive rehabilitation program that lasted three months. Upon “graduation” he was ready to go back home to Ottawa. By then he had a customized care plan to follow, which comprised a number of notes scribbled on various pieces of paper that included information on medications (and when to take them), as well as diet restrictions and recommendations, physical therapy routines and the medical follow-ups he needed to pursue to stay healthy. Being a tech-savvy 30-something, my brother also stored some of these details on the note-taking app of his smartphone.
This both worried me and got me thinking. I thought that there must be a better way to manage one’s health away from the clinic setting. What if there was a way for Ontarians to easily access their personal health records while mobile or at their desk—a tool that would empower them to track and manage their health and to share their records with people, caregivers and organizations that they trust? For my brother, for example, having access to his personal health record would enable him to stay engaged while away from the clinic. He could then track, manage and share information quickly and accurately.
Ontarians will soon receive even more integrated care through a number of programs and initiatives designed to enhance collaboration and sharing of health data between the spectrum of healthcare providers. These programs include ConnectingGTA, Connecting Northern and Eastern Ontario and Connecting South West Ontario. For complex patients, there are 37 (and counting) Community Health Links across the province designed to improve care by ensuring that caregivers have access to individualized coordinated care plans. But what is a way to do the same for us—the citizens of Ontario—that enables us to connect with our caregivers, our providers and our health data?
Blue Button+: A new way to access, download, share and upload personal health data
In the United States, there is a way to keep citizens engaged with their health outside of formal care settings. It’s a consumer e-health program called Blue Button. Blue Button is a set of standards that enables citizens to easily access medication lists, allergies, medical history, vaccinations, health provider and caregiver information, lab results, medical images and other health data. With Blue Button, citizens are engaged with their health, outside of formal care.
Concise history of Blue Button and data elements available
The United States Department of Veterans Affairs (VA) championed the Blue Button initiative in 2010. It was first launched as a part of the VA’s My HealtheVet patient portal with the simple objective of enabling veterans to access their personal health records online. The Centers for Medicare and Medicaid Services and the US Department of Defense adopted the Blue Button standards later that year. Over the next three years, the functionality and data elements available through Blue Button expanded significantly, from text output of simple patient information in 2010 to a more robust set of data that is now machine readable and able to process more complex data elements. Over that period, a number of healthcare insurers adopted the Blue Button in their patient portals, and over 450 organizations pledged support for the initiative.
What could this mean for Ontario?
Blue Button empowers patients to take control of their healthcare data. Better-informed patients are better engaged with their care. Blue Button (and similar personal health data access initiatives) have the potential to play a pivotal role in how healthcare is delivered in the province of Ontario, as it has done for over 70 million Americans who now have access to their personal health data through the Blue Button initiative. Ontario is already rolling out the Green Button standard, which gives consumers direct, timely access to their own energy data so that they can manage their electricity bills and save energy. MaRS recently announced a new pilot program to offer energy management apps to Ontarians. The province could do this with Blue Button.
Some of the apps and tools developed using Blue Button would have helped my brother. He would have had access to all of his complex health information (including medication lists and schedules, doctor appointments, therapy programs and nutrition information) directly on his smartphone. He would also be able to share that information with me if he wanted to, and I would feel more confident about how he was doing and could offer help when needed. I can’t help but think of all of the other double lung transplant recipients who are tracking their care plans on handwritten notes and printed documents. My hope is that some day personal health records will be available to all Ontarians.
Over the next few weeks, I will be exploring what access to personal health data would mean to Ontarians from a health perspective, as well as the economic and health system savings perspectives.