Importance of keeping complete personal medical records?
October 16, 2018 9:49 PM   Subscribe

If so, how to obtain? 29f, Toronto Canada, recently decided to start properly being an adult and getting my stuff in order, wondering how important it is to obtain fulsome medical records, including putting in the effort to get childhood records. Snowflakes within...

Growing up in an immigrant family with parents who dont speak English, I never really thought about my health much until recently. I basically would only go to the doctor when sick and generally the doctor would be someone who speaks Chinese in order to communicate with my mother. When I was two I had some kind of heart surgery (large keloids scar on my chest to show for it) but otherwise have been generally super healthy, no issues. Then in my teenage years I didn't have a doctor at all.

In the past 5 years, I've taken charge of my health and gone and found my own (English speaking) doctor. I recently went for the full diagnoses for ADHD and they basically mentioned that I should ask my GP whether they feel that I should go to a cardiologist before taking any ADHD meds, just in case but I also was unable to properly describe what this surgery was for. Should I try to somehow obtain my childhood medical records? Is it even possible? If so, how? (I can probably ask my mom for the hospital I had my surgery at.. but it also has been 28 years)

Also what should i do on-going? Should i ask for a record of the results from this ADHD assessment?

(I have read this somewhat related previous ask, I hope this isn't too much overlap)
posted by vespertinism to Health & Fitness (8 answers total) 3 users marked this as a favorite
Rest assured that many, many people have incomplete information on their medical histories. So you're not alone! As a datapoint, I'm in my early 40s with a major medical condition. I've never once been asked for records from childhood, which is great because I don't have them anyway.

Here's what I keep copies of:

- Bloodwork
- Dates of surgeries/procedures
- Test results
- Dates of innoculations
- Typed list of current medications, dosages, and what they're for
- Typed list of medications I'm allergic to
- Typed list of current doctors and specialists with their contact info
- Typed list of family medical history, including grandparents, aunts, uncles, parents, and siblings -- stuff like cancer, heart disease, history of stroke, diabetes, glaucoma, etc., and how old they were if they died.

The typed lists, I usually print out copies of them and bring them whenever I see a new provider/specialist. They love the lists and it saves a ton of time.

I also keep a mental note of my usual resting blood pressure, heart rate, anything unusual recently like headaches, etc. I have to run bloodwork every 1-4 weeks, so I'm a stickler about knowing my usual results and whether they're in range.

Your GP may refer you to a cardiologist, who may then order some baseline tests. This is a good thing! You will then have something to compare tests to if something pops up in the future.
posted by mochapickle at 11:00 PM on October 16, 2018 [4 favorites]

If you do want to obtain your records, OHIP keeps a record of all medical services accessed by you with your health card going back 7 years (can help you identify doctors/hospitals who treated you) and doctors keep records for a minimum of 10 years but in practice frequently longer.

The process to obtain them is similar to making a Freedom of Information request (but obviously only you or your authorized representative are entitled to obtain your personal medical information this way).

The information for requesting OHIP records is on the Ministry of Health website. I believe the process for requesting doctor records is on the College of Physicians and Surgeons website. Hospitals usually have their records request department information on their website. All of these involve some variation of making a written request and providing a written authorization. The phrase you want is "complete clinical notes and records" if you want your full file. These requests are routine in all kinds of matters where a person's health is in issue, for example disability claims. There are almost always fees involved, FYI - if your records could be voluminous you may want to get a ballpark estimate or find out the rate first (often charged per page).

Good on you for wanting to be informed, it can really help you advocate for yourself in the health care system.
posted by AV at 2:58 AM on October 17, 2018 [4 favorites]

Another potential point for tracking some of this down: if you ever have/try to have biological children, your care team may also be very interested in exactly what heart surgery you had as a child and why. Records of routine care for childhood illnesses and injuries for someone generally healthy in adulthood may not be worth tracking down, but anything requiring heart surgery probably would be.
posted by LadyInWaiting at 3:55 AM on October 17, 2018 [1 favorite]

If you can track down the hospital where the surgery was performed they may still have records. I went in to North York General last year for a fracture and they had my address from 25 years ago when I last went there. Not sure if they had any health information but it's worth a shot to check.
posted by any portmanteau in a storm at 6:13 AM on October 17, 2018

Surgeons and hospitals who treat congenital heart conditions are more likely to have your records than not, I would think. It’s definitely worth reaching out to the hospital if you know the name (did you go to the Hospital for Sick Children, by any chance?) and seeing if they at least have records of your surgery. Depending on what condition and surgery you had, the surgical records may be needed to understand how your heart currently functions and would definitely be helpful to any cardiologist you see as an adult.
posted by MadamM at 6:40 AM on October 17, 2018 [1 favorite]

I don't think you need your complete medical records but heart surgery is kind ofa big deal so I would go through the exercise of getting your pediatric records, if they exist, just to find out what the surgery was. You don't have to pass on thise full records to your current GP but you should share what your diagnosis was. If you end up seeing a cardiologist you can help them attempt to get those particular records for you, if they exist.
posted by latkes at 7:39 AM on October 17, 2018

Thanks everyone! I asked my mum, and my surgery was done at the Hospital for Sick Children, and I've found information on requesting health records on their site so I'll be submitting a letter that way soon for sure.
posted by vespertinism at 8:01 AM on October 17, 2018 [2 favorites]

Yes, you should ask for a record of the recent assessment.

Ongoing - keep a record of menstruation start dates, duration, cramps/pain/other symptoms, anomalies, and so on. Keep track of family medical history (anecdotal, and professionally diagnosed), and be aware of the generally-recommended health screenings (guidelines which may change as the years wear on, so stay informed).

Also, check your vaccination status.
posted by Iris Gambol at 1:34 PM on October 17, 2018 [2 favorites]

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