I collected health info on others for years. I’m what clinicians call “a good historian” — and in the health context, it means someone who can tell you exactly what happened to them and when it happened, and they turn out to be right.
This is fine… as long as I can keep track, and as long as the story is short enough for someone else to remember after a single telling.
This isn’t going to remain true for any case over a couple of years in the making, and certainly not for a case that even started out with multiple diagnoses: volar ganglion, tendonitis, and repetitive strain.
When I noticed that a doctor’s eyes were glazing 5 minutes into my recital of events, I knew I had to do this differently.
I started keeping a timeline. It was a nuisance to set up, because I got injured at work, and U.S. law doesn’t necessarily allow me to get copies of my records under those circumstances.
So I drafted my first timeline from memory, journal entries, and my datebook, and asked my doctor’s staff, as sweetly as possible, to please check the dates for me. They loved the timeline and were happy to do so.
As you can see, this is before I had a lawyer, and reflected my personal tendency towards information overload:
As you can see, I decided to keep my timeline in a table. I found that to be the most natural way for me to organize the layers of information in a readable way. But then, I had just finished hand-coding and debugging about 21 pages of HTML tables in raw markup. Tables were easy for me!
To some people, a table of text just looks like word salad.
I can understand that.
There are other ways to organize information: brain maps, fishbone diagrams, bullet lists with nested lists, even labeled images linked together. Search any of those terms, or even terms like “information architecture” or “flow charts”, to look for ideas.
I took a later version of this to my first QME (QME=Qualified Medical Examiner, a consultant called upon when a U.S. insurance company disputes care in an injured-worker case.) Bless his stern and rock-bound heart, he gave me excellent advice. Here it is, as close to his wording as I remember:
- “Leave out the insurance stuff. It’s not my department. It’s distracting, annoying, and clutters up the timeline for me.”
(I was not offended, because I’ve worked with a lot of hotshot doctors. I fully expected the brusqueness and just listened to the words for information. That information was pure gold.)
- “In fact, thin this out a lot. I want facts, data, not suppositions or what you read. I want to know exactly what happened to you and what your doctors said or did. Everything else is filler. I’m a doctor, so doctors’ ideas are what I care about.”
(That was frank! And an excellent statement of inherent bias, which I really appreciated knowing up-front.)
- “Take out the personal impact? No! No. I want that in there. It tells me how this really affects your life, and I should know that.”
(He was almost human when he looked at me then. It was a cool moment.)
- “But I DO want the personal impact to be visually distinctive, so I can screen it out when I’m looking for the medical part alone.”
- “I’d also like to be able to find your work status more easily. This is a worker’s compensation case, after all.”
That man should advise more designers. He’s retired from his medical career now, and I hope he’s enjoying himself immensely.
My next timeline, for my next QME, was much leaner and it distinguished between three key types of info: straight medical information, work status, and personal impact.
Did you notice how the hand images I wrote about before are referenced right in the timeline? This is a great way to build your case. The pictures kick the message of your disease progress and your needs right through concrete.
Incidentally, this uses mutually-reinforcing teaching principles: multiple sensory inputs, plus multiple paths to the same info, equals excellent retention. Your doctors will really be able to remember what your case looked like and what happened along the way, what worked and what didn’t.
Dr. F was pleased to see the table and thought it was basically a good idea, but looking at it through 78-year-old eyes was a different experience. He gave me his own feedback, speaking as someone who had gone through more medical records and had more problematic vision than anyone who’d looked at it yet:
- “Yes, it’s nice that you picked out the work status, but I want to be able to see surgeries, x-rays, the really important stuff, just as easily. No, even more easily.”
I picked those out in bold and flagged them in the left column:
Before long, I learned to condense multiple entries so I could use one row for several visits that were about one issue, or where there wasn’t much change:
Then I saw a doctor who had more human sensibilities. He said,
- “Why not use colors? I want to see surgeries and tests in different colors.”
I asked, “Do you want the different kinds of tests in different colors, so you can distinguish Xrays from MRIs from nerve studies at a glance?”
- “No, no, that’s too much. I can read EMG versus MRI; I don’t want too many colors. I want the surgeries to really stand out, though. Put them in red.
- “And I want to see the legal pivot-points, too, because that affects your case.”
Then the first page grew legs. Someone along the line said,
- “One more thing. I’d really like to see your allergies and medical-surgical history immediately. If you could put that up front on this, that would give me the most critical medical information right off.”
That was a real forehead-smacker for me…
I used to be a triage nurse. I used to collect certain information on every patient I saw, regardless of age, sex, race, or what they came in with.
– Name, date of birth.
– Any medical diagnoses.
– Any surgery, with dates.
– Current medications and doses (if they recall), and what they take it for. (This fills in a lot of holes on the medical and surgical stuff — you’d be surprised what people forget. “Oh yeah, my heart stopped last month.” Good to know!)
– Allergies — and what the reaction is (because there’s a world of difference between something that gives you a stomachache and one that stops your breathing, and we need to know this if it winds up in the air or, heaven forbid, the IV line.)
This is basic. This is absolutely basic. It’s essential information that should be immediately surfaced on every patient’s chart. How could I take for granted that it would be easy to find in my medical record? The whole point of needing the timeline is that, after a couple of years, my medical record was a mess!
Also, after years of popping from one specialist/QME/consultant to another, I got tired of having to dig out the same demographic and billing information every time they had to generate a new chart.
I had a brainstorm: make the first page into a billing/demographic sheet, add the triage information, and start the table on its own page after that.
It all goes together on the medical chart anyway, and one of the unsung truths of medical care is this: make life easier for the desk staff, and they will make life easier for you.
After all this time, I can put my whole history with this disease into one single document that totals 10 pages.
- The first sheet has my contact, billing, and demographic info.
- The second has my more-extensive medical/surgical history, medications and yet more allergies, and priority notes, highlighting my CNS sensitivity and emphasizing that cognition matters most.
- The rest tells all the key points of 14, yes, 14 YEARS of injury and disease, in only seven and a half pages.
Here is the final result:
Every doctor, with one exception, who has seen this, has cooed — literally, cooed — with delight. They ask if they can keep it (I tell them to put it in my chart, so they can always find it. “Ooo, great!” they say.)
This one doctor looked at it, laughed rather sardonically, and said, “You spend way too much time on this.”
Clinical note: For the record, that is not an acceptable response. What clinician makes progress by dissing patients on the first visit? Right. None. The thing to do here is ASK; in this case, ASK how much time this patient put into creating the documentation. The answer certainly surprised this one.
I set him straight, in my sweetest tone of voice. I said, “After the initial setup, it requires only a couple of minutes of maintenance every few months. That’s it. Moreover, you’re forgetting that I used to be an RN and a software documentation writer; this information is easy for me to understand and easy for me to organize. If I CAN’T do this [gesturing to the document in his hand], you need to check for a pulse.”
He never sassed me again.
However, most of what I told him is true for all of us.
We are the subject-matter experts on our own bodies. Never forget this and never let anyone tell you otherwise, because they are wrong. You ARE the subject matter expert on your own life. Nobody else really knows how you feel or what you’ve been through.
It’s in your power to communicate that clearly enough to work with. It’s just a matter of figuring out how.
Once you get a timeline set up and put in the key events so far, it takes very little to maintain. I update mine before every key doctor visit — when I see a new one or when I need to see a QME or, of course, when I think a doc is losing the plot.
It takes me less than half an hour to update contact info, meds, and current entries, and I do that once or twice a year now. That’s a great effort/benefit trade-off!
Moreover, keeping a timeline has life-changing benefits besides simplifying explanations to my doctors. Every long-term patient can see how utterly transformative these changes can be:
- The doctors take me and my case absolutely seriously from the get-go (or else it’s obvious right off that this person is never going to, and I need to move on. That saves time!) It stops arguments and attitudes before they even start. It makes me almost human in any good physician’s eyes, and that’s nearly a miracle, because, generally, they can’t emotionally afford to think of their pain patients as human. (This explains a lot.)
- My medical records are a lot more accurate, because the providers writing them have this great cheat-sheet right there to help them stay on track and keep their facts straight. This has saved me more grief, bad treatments, misapplied care, getting meds I’m allergic to, and chasing red-herring issues with the insurance company, than I could ever count.
- I can keep my limited brain-space free for handling the appointment and looking ahead, instead of trying to wrestle my complex history into shape. This makes my visits a lot more valuable to all concerned.
I consider my timelines to be worth roughly 1,000 times their weight in plutonium. A little bit of effort has paid off thousands of times over, and made it immeasurably easier to keep this messy, protracted, brutally complex case on track for nearly one and a half decades.
Now that’s a good trick!
- Put your name and the date on every page.
- Put triage information (in second blockquote above) at the top.
- Highlight surgeries and invasive procedures in bold and red.
- Highlight tests and noninvasive procedures in a different color or style.
- Highlight life impact, but keep it separate from medical info.
- Attach the relevant doctor’s name to each procedure, diagnosis, or consultation.
- Track adverse events.
Remember, this and all my blog work is under a Creative Commons Share-Alike Attribution license: do anything you want with it, as long as you don’t keep others from using it. I’d love it if you’d credit me with my work, but don’t let that slow you down.
Use it. Share it. Spread it around.
Bien approveche — may it do you good 🙂