Many Canadians are not connected to their electronic health information. But this is not because there is a shortage of these records. You likely have multiple digital health files, some you may not be aware of, and many you may not have access to.
There are increasing calls for Canada to create a single comprehensive national health record that would include data from all health-care appointments and interventions, no matter who provided it or where they were located.
A single sign-in to a complete and detailed record is an ideal digital health future. But there are a lot of different ideas about how best to get there and many challenges that remain. As we debate how best to move forward, improving patient data access should be a priority.
In our research with patient partners we explore the empowering effects of real-time access to electronic health data. We have found that patients are eager to know more and see what practitioners see. Electronic data access can help them feel heard — allowing them to be more engaged and active partners in their own health.
Patient access to health data can also support positive health outcomes, but opportunities for this vary across the country. As this technology becomes more common everyone should know about the different types of records that exist, and what access may be available in the province or territory they live in.
Electronic health record (EHR)
In Canada the term electronic health record (EHR) has most often been used to describe a national project, led by Canada Health Infoway, to establish a digital record that would be accessible to every patient in the country — no matter where they live or want to access it from.
This EHR should contain the following data: a personal identifier, lab results from blood work or other tests, diagnostic imaging reports, medication history, immunization records and discharge notes from any hospital stays.
Electronic medical record (EMR)
Most doctors in Canada also use digital systems to manage their practices. So many patients who see a family physician or other health-care provider also have an electronic medical record (EMR).
While your EHR is meant to be accessible across the country to any clinician who might need to see that data to provide care to you, your EMR is most commonly available only to your family doctor or primary care clinic.
EMR portals in hospitals
Many hospitals or large care institutions also have EMRs to connect all providers within that system. The data in these records is often also made accessible to patients and includes more information than is found in the EHR — such as detailed notes from clinic visits.
Patients typically access their hospital EMRs through portals. At the University Health Network for example, the portal myUHN recently marked a milestone of more than 90,000 patients enrolled.
Personal health record (PHR)
As more health applications and tracking tools have become available on our computers or smartphones many people have also begun to gather their own data in a personal health record (PHR).
For those managing an ongoing health concern or condition for themselves or a family member, and for those working on personal health goals, the PHR has become a useful tool to track changes over time. A PHR allows patients to create their own single record for data that may be gathered from many different providers.
Provinces with EHR access
So you very likely have an EHR, you could have more than one EMR especially if you see many different health-care providers, and you may have created one or more PHRs to track different parts of your own health journey (the easiest records to keep track of as they are usually patient directed and controlled).
But how much of this data can you see? What can’t you see? And how many portals might you have to log into to get this data?
Canada Health Infoway has also launched a new initiative called ACCESS 2022. This involves providing more Canadians with access to their EHR as well as developing other virtual health-care options.
Provincial EMR systems
On the EMR front, things vary across the country. Alberta is currently rolling out Connect Care, a system that will create a common clinical record across the province and will also include patient data access.
There are many regional portal access options for Ontario patients in addition to myUHN such as Ontario Shores’ HealthCheck, MyChart at Children’s Hospital of Eastern Ontario and the myHealthRecord Portal at Women’s College Hospital.
A challenge with the number of these offerings is that they leave patients juggling access through multiple portals.
In British Columbia and Ontario, My ehealth delivers access to lab results and some other hospital data to patients.
EHR, EMR, PHR… it can be a lot of records to keep straight. These terms are also often interchanged by different providers within digital health. This can be frustrating for patients — when what you thought was your EHR is now promoted as your PHR.
The issue of privacy
And how is all the data kept safe? There are both provincial and federal laws to protect the privacy of your health information, including when it is in digital form. There are people who work to protect your health information, just as there are people who help keep your banking information secure. And while there is no way to absolutely guarantee this data will not be accessed by unauthorized outside parties, there is a lot of protection in place.
An increasingly common privacy worry now is that health information will be shared with other parties without patients knowing. Recent news about Google acquiring massive amounts of health data in the United States is raising questions about this in Canada.
Patients want the data
The use of EHRs is a global effort. Both Australia and the United Kingdom are developing large scale public electronic health records for their citizens, seeking the same quality and safety improvements to health-care delivery as Canada.
Although some countries such as Sweden have achieved a national record, many countries are still challenged by the existence of multiple records and the ability to share data between them. Supporting patients to sign up and use their records can also be a challenge.
If Canada does continue to work towards a comprehensive national health record this would be an ideal chance to embrace OpenNotes. OpenNotes provides free tools and resources, to support patients who can see all clinical notes written about them by doctors, nurses and other health-care providers.
Many patients want this data and to be able to access it through one portal and one record that can create a newly informed health-care future for us all.