Suppose your child’s school has sent a note home with her requesting proof of her immunization. This note could quite easily end up at the bottom of her backpack and very quickly be forgotten. However, the school hasn’t forgotten its request and has sent a follow-up letter home warning of your child’s imminent suspension if you do not provide the requested information.
The obvious next step is to try to find your daughter’s yellow vaccination card, but this might take a while as you can’t remember where you last placed it. When you do find the card, you notice that it isn’t up to date and you can’t remember whether your daughter received her latest shot. Now you’re on the phone trying to make an appointment with your family doctor or, at the very least, attempting to receive confirmation that your daughter’s vaccinations are up to date. As with most family doctors and pediatricians, yours is busy and her voicemail is full. After repeated attempts, you’re finally able to speak with the doctor and receive verbal confirmation that your daughter has in fact received the latest immunizations.
Next, either you fill out the yellow card and send it to school with your daughter or you call the school directly to update them. Either way, the entire process from initial request through to final confirmation took you about nine days. While you may think that this is a fictional and unrealistic situation, it is in fact a real incident that one of my co-workers went through with her daughter’s school last year.
Given the progressively digital nature of the healthcare system and of our society in general, you may wonder why this process took so long. What if your child’s school or local public health agency could simply email you with a request for your consent to allow them to access your child’s immunization records directly from your family doctor or from another health data repository? This process could take as little as a couple of minutes, as opposed to the nine-day process my colleague experienced.
Consumers are increasingly living at the centre of two growing but disconnected health data worlds. We have the non-formal health data world comprised of self-generated and collected data (such as weight, sleep quality or steps taken), as well as the formal clinical health data world (that is, lab results, diagnostic imaging or immunization records). While Ontarians are able to readily access and even share their non-formal health data, the same is not true for their formal health data. Individuals can often experience barriers when it comes to accessing their formal medical data and in the select cases where they are able to access this information it is either a manual process (such as printouts or photocopies) or an institution-specific process.
Through its MyHealth initiative, MaRS Data Catalyst is working to change this reality. Together with public and private stakeholders in Ontario’s health system, MyHealth is working to create a bridge between consumers and their formal health data, allowing for access to and exchange of this data with applications, services and devices of their choosing—all while ensuring consumer control, privacy and security. We believe that enabled citizens who have access to a complete picture of their own health, as well as to the innovative tools required to achieve their personalized health and wellness goals, have the potential to drive a fundamental transformation in healthcare.
Ontario has already created an invaluable foundation of record-keeping in acute-, primary- and community-care settings. We have active telemedicine and telehomecare programs, electronic medical record adoption by community-based practices and a number of regional health information aggregation points (like ConnectingGTA) that have been integral to Ontario’s transition toward a modern information technology–supported healthcare system. While these are primarily clinician-focused assets, the province has always considered the consumer to be an integral, albeit eventual, user of these assets.
At MaRS Data Catalyst, we believe that the net benefit of informed and healthy citizens is far greater than the benefit that can be delivered by government and healthcare systems alone. Building on our experience providing citizens with access to their electricity consumption data, we are excited to introduce this ambitious and timely initiative.
We would love to hear your stories about health data access and how this initiative could, when realized, support you and your loved ones in meeting your health and wellness goals. Send us an email with your feedback.
Shahab Shahnazari leads MaRS Data Catalyst’s work in the health space. Managing the MyHealth initiative, Shahab is working with a multi-disciplinary team to create an innovation platform that will give consumers control over their health data and allow them to share it with products and services that can support them in meeting their health and wellness goals. See more…