Is all your health information accessible to all providers? Why you might want to keep a paper trail

What would you do if you couldn’t ensure all your banking info was up to date? Imagine inserting your bank card at the gas pump only to have it declined because it says you have “insufficient funds,” but knowing you’ve got more than enough in your account. Would you be frustrated, angry, and alarmed? How do machines easily access your banking details with a simple 4-digit passcode, no matter where you are? Do you assume financial institutions know how to secure and protect your information and money? You likely rely on their systems to protect and enable you to make purchases, like gas, effortlessly.

What about your health information?

Can you be confident that your health data and entire health record are complete and available to any healthcare provider when needed? What about your prescriptions from your drug store? Is that information available if you suddenly experience an emergency or a routine doctor’s visit?

The short answer is no.

Unfortunately, despite promises of increased reliability and access alongside the importance of security in the digital age, our health information has become widely fragmented. Some information is housed in electronic medical records (EMRs) at your family physician’s office. Some are kept on a clinical information system (CIS) which is different from an electronic medical record. The result is that your health information is not in one place and can be easily accessed by you or your service providers. But there’s now a project that aims to remove the barriers and silos in critical healthcare and patient information.

Connect Care aims to connect all hospitals and ambulatory care centres across Alberta. That’s a good thing. The information in a CIS, like Connect Care, will eventually be accessible by emergency departments or inpatient and ambulatory care clinicians across the province.

Further, Alberta Netcare, an electronic health record (EHR), different from an EMR and the Connect Care CIS, maintains a record of your immunization status and your most recent diagnostic information, such as x-rays.

It also contains access to the Pharmaceutical Information Network (PIN), which has your medication history. But it doesn’t include access to an updated history or discussions about the care provided by your family physician. If your family physician has an account, Netcare may be accessible at your primary care clinic, but not all clinics have access to Netcare. What if you cannot advocate for yourself and provide up-to-date history? If you don’t routinely carry a detailed record of your care or medication record, it’s unlikely that all the information needed by a new provider will be available. At least not yet.

These issues don’t exist in the financial and banking industry for two reasons: one is known as interoperability, and the other is associated with how policies and legislation govern the sharing of health information.

Interoperability is how an information system or an app works with other systems or apps to exchange information. It is a two-step process that includes the use of servers (physical or virtual) that allow information systems to communicate; and protocols between those systems that enable the communication or the sharing of that information. There are thousands of proprietary digital health information systems in use. And each system maintains unique protocols that protect and prevent the use and disclosure of that information to a greater or lesser extent. What is problematic is that each system collects only ‘some’ of your information. As a result, fragmentation of health information is increasing, resulting in greater risk to each of us and to the providers who are doing their best to deliver care when we need it.

Each of us needs to take much more interest in our health information. Where is it? Who has access? Is it accurate? As we add apps to our devices that capture more health data or begin using virtual care out of convenience, we better consider whether or not that data is being collected and if it’s accessible by other providers, particularly our family physicians.

So what can you do?

You need to be asking your legislators and decision-makers if (when) our entire health record will be merged over time into a single individual health record.

Wherever you routinely access primary care, ask your provider if Alberta Netcare is used at that clinic. If you rely on virtual care, ask the same question. You need to know. Your life may depend on it.

Until issues of interoperability and governance are solved, you might want to start building a paper or digital health information binder. Either way, little will change unless we all begin caring about our health information as we do our banking.

Annamarie Fuchs

Annamarie Fuchs is a healthcare consultant, former clinician, and creator of the Partners in Health blog. She is also a former Board member of Imagine Citizens Network.

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Photo by Georg Arthur Pflueger on Unsplash