Medical history timeline: a tool for doctor visit storytelling

This is a follow-up to my last post, in which I described how visualizing one’s own medical symptoms and progress in the form of a timeline (in addition to other visualization formats) might help people better understand what is happening to them – and help them communicate with health care practitioners.

I recently took a print-out of my own medical timeline (which I had created from memory) to a new Doctor I was seeing, hoping that the visualization of my symptoms and medications would help him better understand what I was experiencing and thus better understand how to treat me. The new doctor was Dr. Richard Ash, a medical doctor in NYC who is known for embracing alternative therapies.

The whole timeline - click and enlarge for the full experience

As it turned out, he spent less time with the visualization than I had expected. Because he had seen similar complications in the past, he felt confident that he knew what was going on with me before I even had a chance to show him the timeline. I also realized that Doctors and their staff communicate through their own language of scribbles and shorthand, and they wouldn’t necessarily want to take any extra time during an office visit to understand this new visual language.

But this timeline prop was still extremely beneficial, because it helped me tell my story in a chronological manner and it helped me remember all of the details I intended to talk about. For comparison purposes, here’s what usually happens during an office visit with a new doctor (or, for that matter, an office visit with an existing doctor but for a new problem):

I go into a bland, beige room devoid of any personality. It looks like this.

Typical exam room: beige-splosion

I sit on a paper-covered table and swing my legs. I look around for a magazine, and I might find a tattered Travel or Highlights for children sitting next to a stack of educational pamphlets (perhaps on the perils of chlamydia or the importance of proper nutrition, depending on the doctor). I stare into the distance. After 10 or 15 minutes, the doctor knocks and comes in the room.

‘So, what brings you here today!?’

At which point I spew forth whatever words and thoughts come to my mind, sometimes aided by a scrap of paper on which I may have written a short list of things like ‘calcium/bones, guts, tingly legs.’ I usually feel a little rushed, conscious that the doctor inevitably has back to back appointments, so I end up abbreviating my story to accommodate him/her. But once I’ve left the office, without fail I realize I forgot to mention a certain symptom, or a certain thought. Sounds inefficient, right?

But this time was different – when I spread the taped-together timeline in front of Dr. Ash and started talking, an ordered and coherent story unfolded and a bigger picture disorder came immediately into focus. I was able to point to certain phases of my history and explain what had been going on at the time. I talked quickly and deliberately, and showed both my timeline and full list of symptoms. The result was a more structured conversation that allowed me to communicate my story more efficiently while saving the doctor from having to listen to five minutes of my rambling.

I suspect I’m not the only person who has a hard time articulating my symptoms, fears, and questions when I’m sitting in a stark white room in a paper smock. We don’t often think about the importance of this moment to our healthcare experience, but it’s usually the only time we have the doctor’s full attention. How empowering it would be for all of us patients to take a little control over this moment and present our stories like expert witnesses.

I’m still feeling energized and inspired by the idea of empowering the masses and will continue pursuing it, while I’m also spending lots of time and energy getting better myself.

<3

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15 thoughts on “Medical history timeline: a tool for doctor visit storytelling

  1. An inspiring tale of empowerment. Thanks for sharing your experience here – and at the recent Design for Health workshop! Wondering how this could be made into a tool that would enable others to enjoy similar benefits from an ordered and coherent visually compelling story of an otherwise often chaotic disorder (or collection of disorders).

  2. Katie, again I’m floored with the possibilities. I have had no where near the medical issues you have had and yet I have had the EXACT same experience in the doctors office. In addition, mom died primarily to complicates with sjorgrens disease (an autoimmune disease) and I watched over the course of ten years how she was treated by varying specialist with very little coordination going on between them. At one point she was taking 33 different medications a day. It demonstrated how disjointed our health caree system really is. I even discussed with a few freinds the idea of raising some capital to start a clinic where each patient would have a health coordinator and there would be a variety of health care providers under one roof, MDs, nutritionalist, PTs, chiropractors, pharmicist, etc. This would be done with the intention of attempting to provide a truly more wholistic approach to health. Your visualization tools would be ideal for something like that.

    On another front, I could also see them being an incredibly effect training tool for triathletes and other serious athletes.

    This really is fascinating.

  3. This is the first useful wellness app I’ve seen, in that it portrays the kind of whole-person view that will become prevalent (one hopes!) in the future. It is a great model to build from, and shows I think what a real personally owned/controlled health record should like. Fantastic job Katie.

  4. Such a good idea! Do you know of any software apps that produce similar results from patient input? It would be great to put your skills to use in this way!

    • Thanks! There are a lot of apps for smart phones that can output visualizations based on regular data input, and the patientslikeme site has some interesting visualization tools. But I don’t know of anything that allows you to build something from scratch in quite this way.

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  10. Katie, how did you create the timeline? Can you share?
    I have just spend the last 2 days pulling every insurance receipt for medical services and medical reports together and putting 12 years in chronlogical order. I am looking to put the information to a spreadsheet (if I cannot find the sample reports I want in existing PHR software) to be able to make a timeline like yours. Any pointers?

    Barbara

    • Hi Barbara! I created my timeline from memory – I started with pencil and paper, and then I transferred everything into a graphics program called Illustrator. Unfortunately I don’t know of anything that would help you generate a timeline like mine, though I haven’t explored all of the PHR options out there – let me know if you find anything helpful. If you decide to use the spreadsheet you could try using certain annotations in the spreadsheet itself – using background color of the cells to highlight certain key moments or a range of symptom severity (like a scale from white to pink to red for example). I’ve tried using google drawings, but I found it difficult to create something legible. I’m sorry I can’t be more helpful, but I’m hoping that someday soon there will be tools available for you to build the type of timeline you’re talking about.

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