One of the interesting side effects of living with a first-year university student in what is essentially pre-med, is that occasionally I get asked input on issues related to the medical system. One such topic that came up was digital technology in medicine and it’s impacts on patient health and care.

Hey, wait, I’ve got something for this.

Immediately my mind went to the MyChart system that the Ottawa Hospital used back when I lived there.

The MyChart system is basically an online portal that allows patients who register for it to access their chart online. It’s not complete, but it contains notes on any tests run in the hospital network. The part that was most useful for me however, was the fact that it let me access up-to-date blood test results when I was in the hospital.

One of the realities of being a neurodivergent woman with a chronic illness, is that I have to navigate a prejudiced medical system. It’s not uncommon for certain symptoms to be taken less seriously when they present in women, a part of the medical systems pathologizing of either having a uterus or being a woman. These symptoms can include among them, abdominal pain and iron deficiency, two major aspects of Crohn’s Disease.

In addition, frequent hospitalizations that result in being given pain medication means there is always a risk of being mistakenly perceived as a drug seeker.

All these things put together make hospital visits not only very stressful but inconsistent with regards to quality of care and treatment. The worry of course is for something serious like a blockage, fistula, or abscess being missed because the doctor assumes you have a low pain tolerance or thinks you’re trying to score. Not to mention being in severe pain is both unpleasant and also not good for your health.

Knowledge is Power

Having access to my blood test results on a live basis, let me know exactly what was going on without relying on doctors to give me all the information. I’m lucky, thanks to a certain amount of privilege I have had both schooling in areas related to biomedical sciences as well as some doctors who have been willing to explain things to me in the past. As a result, I am able to understand and to some extent interpret my blood test results. Being able to look through them before the doctor comes back in to see me lets me take charge of my medical care and deal with the doctor on an equal footing.

Often the tactic is to start talking about the test results as soon as they walk in. It puts them off balance which in a lot of cases makes them more willing to go along with my recommendations, which usually involve ordering more tests and getting a GI consult.

While that’s not always a guarantee that I will be taken seriously, it can up the odds quite a bit. At the very least, having the information at my fingertips meant that I couldn’t be as easily dismissed without being able to account for specific details regarding my test results.

Health Management

Assistance with dealing with doctors, however, was not the only benefit to getting access to my test results. Being able to see a more detailed profile of my electrolyte levels let me gain a much better understanding of which nutritional deficiencies were most likely to result from a flare and adjust my diet accordingly.

Moreover, getting to see the results over time and to be able to compare symptoms and changes over time, helped me learn to recognize more subtle symptoms of an impending flare, and in doing so, be able to take steps to help prevent the flare from reaching a more critical point. I now know, for example, that when my body starts craving more salt, that it means my digestion has been compromised. It means switching to easier to digest foods to let my system rest a little and increasing my other meds slightly.

Being able to see numerical representations of what was happening inside my body, helped me to understand my body better.  When you live with chronic pain and chronic illness, a big part of your life becomes consumed with managing your health in the best way to avoid a flare up of your symptoms. We are expected to do so and yet, very often, we are given few resources to be able to gain a complete understanding of our bodies and exactly what it is that is happening inside us.

The internet has been great in this respect for creating a portal of information where patients can learn about the human body, get more in-depth overviews of what our condition actually is and the various ways it can manifest, and it allows us to share information with one another to compare notes.

There’s a rub

There are two major problems with the internet. The first is that there is a wealth of misinformation available. Without a decent starting foundation, it can be easy to find stuff that seams plausible but is actually incorrect or even dangerous. There are ways around this, such as making sure to verify information with multiple sources, sticking to reliable sources, and so on.

The other issue however, is that many doctors will often disregard concerns if the research that led to them came from online, or they will label you a hypochondriac. The idea that perhaps they were simply looking for understanding of what is happening to them, never seems to be considered. Some of that, of course, is ego. If they had to spend years studying to become doctors, how can patients expect to understand anything from just reading things online.

Some people may have experienced being met with hostility from a doctor when asking about why their doctor was leaning in the direction of one diagnosis over another, or bringing up the concerns of some symptoms adding up to mean something else. This aggression can take a variety of forms and makes it more difficult for patients to discuss their anxieties with their health provider.

While this perspective might seem understandable, it misses the fact that an unstructured education is still an education and that a patient is often not studying all the different areas of medicine but rather narrowing their focus to their own specific concerns. They are motivated by their own fears and uncertainties which can propel learning in a way that going to school may not.

It Takes a Village

Of course part of a the problem is that chronic illnesses are rarely single issue events. Many illnesses are co-morbid with others, such as IBDs and Arthritis for example, and different treatments also carry with them the possibility for related issues. As a result, you are often not just dealing with a single specialist. In addition to trying to learn about your own condition or conditions, you are left trying to figure out which symptoms are part of the overall problem or which might be related to some new concern.

While a family doctor or GP is supposed to help manage all this, many of them are also swamped with several other patients who also have entire health profiles to manage. Things can get missed and fall through the cracks. Additionally, there is a shortage of family doctors in most of North America, and it’s not guaranteed that any given patient has regular access to one.

Having access to my own results let me find out, over a year and a half before any doctor actually remembered to tell me, that I had prednisone induced osteoporosis. In fact, the first time a doctor actually bothered to tell me I had it was when they informed me that the osteo had led to me losing all the remaining cartilage in my right hip.

Similarly, months after a recent admission in the new region I’m living which doesn’t have the mychart program, I found out that the CT which “looked good” to the ER doc except for a questionable cyst on my esophagus, had actually shown three other cysts, a kidney stone, a hernia, and extensive joint damage. Had I had this information earlier, I could have consulted with my gyno about the ovarian cyst when I saw him, and instead I have to delay until I can next get an appointment.

A Penny for Your Stats

The information in your chart is information about you, information about your body, your medical record. Despite that fact however, getting a copy of this record is often expensive. When I was working on my appeal of for the Tribunal when applying for ODSP, the cost to get my record was about $200. This is my information, yet I have to pay money to access it.

A medical record can give you more than just your results but also includes the comments and observations of the technicians, the doctors notes on your presentation of symptoms, their reasoning, a lot of tiny details that help give you a more complete profile of your health and what it all means.

Considering that all the information is directly regarding you, it’s ridiculous that you don’t have regular access to it. It’s ridiculous that the cost of getting access is so high and Canada, and likely higher in the states. Programs like MyChart should be just the beginning and become standard.

Information is an essential part of helping patients to manage their care. It would help keep Doctor’s accountable for having to follow up test results and stats regardless of their own internalized biases. It would give patients a better starting point for researching their own health issues and get a clearer picture of which areas of concern apply to them or not.

Having access to the results could mean that patients can use appointments to discuss those results without having to think of all their questions in the moment while still processing the shock. It means they can use that information to advocate for themselves when doctors try to ignore the problem by pathologizing their weight or their gender. Having those medical records makes it easier for patients who have to rely on walk in clinics and patchy care, not to mention seeking a second opinion regarding diagnoses or concerns.

With the near universal integration of digital technologies into our lives, there are all sorts of solutions for making this information available to patients without requiring obscene costs. There are also many other ways that these technologies can be used to improve patient care and access to safe, accurate, and complete information without being at the mercy of unreliable sites and pseudoscientists with an agenda. It would help patients be in control of their own health management, without relying on overburdened family practitioners to remember what they have and haven’t told you. It could be used to help patients track symptoms in a way that is readily accessible to their doctors so that when areas of concern begin to come up, they can be addressed early.

In the past, I’ve encountered many people for whom access to their medical records suddenly answered major questions about their interactions with doctors. Some had discovered a diagnoses that they had never been told about. Others found that a doctor had entered false information which impeded their ability to get other doctors to take them seriously.

Having regular access to their file, could mean that patients have the ability to recognize problems as soon as they occur. It’s a cliché but true but having access to information is power and it’s a power that should be squarely in the patient’s hands. Especially since the information belongs to us to begin with.

What are some ways that having access to your medical information has helped you?