Keeping your own health notes

By Lior Rabanian · · 5 min read
  • Privacy
  • Method
  • How-to

You have ten minutes. You have been meaning to mention three things and you remember two. Asked when it started, you say "a few months ago", which is what everyone says and is almost always wrong by a factor of two. Asked whether the last medication helped, you say "I think so".

None of that is a failure of memory. Symptoms are noticed rather than recorded, they change gradually, and the version you present in a consulting room is heavily coloured by how you feel that morning.

A page of notes changes the appointment substantially, and it takes very little.

What to write, and why each part

When it started, with an actual date. The most useful single item. "Since around 4 June" is clinically different information from "a few months", and you will only have it if you wrote it down near the time.

Frequency and pattern, in numbers. Twice a week, worse in the mornings, three bad days in the last fortnight. Counting is unglamorous and it converts an impression into something someone can work with.

What makes it better or worse. Noticed over weeks, invisible in a single day.

What you have already tried, and what happened. Including things that did not work, with rough dates. This prevents the loop where you are prescribed something you tried in March.

Every medication and supplement, with doses. Written down, because reciting from memory under mild stress is where errors happen.

Your three questions, written before you go. This is the one that changes the appointment most. Ten minutes goes fast, the conversation follows whatever the clinician opens with, and the thing you most wanted to ask is regularly the thing you walk out without asking.

Afterwards, five lines

Immediately, before you have left the building or straight after the call.

What they said, in their words. Not your interpretation. You will re-interpret it three times over the following week and end up with something that was never said.

The name of anything they named — a condition, a test, a medication, a referral. Spelled as best you can. This is what makes the rest of it searchable later.

What happens next, and who is doing it. The referral, the test, the follow-up in six weeks.

What you are supposed to watch for. The "come back if" list, which is the single most safety-relevant thing said in most appointments and the most commonly forgotten.

What you did not ask. For next time.

Five lines. It is the same discipline as writing up a meeting immediately, applied where the stakes are higher and the recall is worse, because appointments are mildly stressful and stress degrades memory precisely when you most need it.

Why the record beats the impression

A pattern you have written down is a fact. A pattern you have noticed is a feeling, and feelings about your own body are systematically distorted in a specific direction: whatever is true today feels like what has been true generally.

That matters in both directions. Something that has quietly worsened over eight months feels normal, because each week resembled the last. And a bad week after four good ones feels like a relapse when the record shows it is the first bad week since April — which is genuinely reassuring, and unavailable without a record.

Neither of these is available from memory. Both are available from a dated line a week.

Where these notes should not go

This is the part worth being deliberate about, because health notes are among the most sensitive text most people ever write.

Not in a shared workspace. Not in a work account, a team tool, or anywhere your employer administers. This should be obvious and it happens constantly, because the work app is the one people have open.

Not in a health app whose business model you have not read. The consumer health app category has a poor record on data sharing, and "anonymised" is doing a great deal of work in most of those policies. This is your medical history; treat the choice of where it lives as a decision rather than a default.

Not where a shared device will show it. A family iPad with your account signed in is a shared device.

Somewhere encrypted, ideally. Full-disk encryption at minimum, and per-note locking if your app offers it — the same reasoning as locking any note that would matter, applied to the clearest case there is.

The arrangement that matches the material is a local file on a machine you control, encrypted, with no account and no service in the middle. Not because companies are malicious, but because the safest data is data that was never transmitted, and this is the category where that principle is least worth compromising.

What this is not

Not diagnosis. A record of symptoms is input to a clinician, not a substitute for one. Searching your own notes for a pattern and concluding what it is has a worse track record than almost any other use of writing things down.

Not a substitute for your medical record. Your clinicians hold that, it is authoritative, and in many countries you can request a copy. Your notes are a parallel record of what you experienced and what you were told, which is a different and complementary thing.

Not a project. Five lines around an appointment, and a dated line when something changes. Anything more elaborate becomes a way of paying more attention to symptoms, which is not always helpful and is occasionally the opposite.

For someone else

Worth mentioning, because it is where this matters most and where it is hardest.

If you are managing appointments for a parent, a child or a partner, the same notes are more valuable and more difficult — the person in the room is not the person who remembers, and you are frequently coordinating between clinicians who are not talking to each other. One note per person, dated entries, medication list at the top, questions written before.

The same privacy considerations apply and are sharper, because this is somebody else's medical information and they did not choose where you keep it.

The honest version

Most people will not keep a health log, and for most people, most of the time, that is fine.

The version that is worth doing regardless is much smaller: write the date when something starts, and write down what you were told straight after an appointment. Two habits, thirty seconds each, and between them they cover the two things that reliably go wrong.

Cyanote is a reasonable place for it for one structural reason: everything is in a single SQLite database on your own Mac, with no account and nothing transmitted, and any note can be locked with a password and is encrypted where it sits. There are no AI features reading your notes and no sync service holding a copy. For a record of your own health, "nobody else has this" is not a feature claim — it is the requirement.