Patients who hack their healthcare

I’ve been inspired lately by patients I’ve met who have, in some way or another, hacked their healthcare. These are regular folk – some using their unique skills and some simply using the tools we all have at our disposal – to better cope with, communicate about, and manage their illness. Here are a few examples.

Designer sharpies her skin

I have a designer friend who had a strange pain, but couldn’t figure out exactly how to describe it to her doctor. So she whipped out a sharpie and drew on her skin exactly where the pain was. She told me her doctor was pretty shocked (I believe the location of the sharpie drawing was in a sensitive female region), but it did help her get her point across.

Creative problem solver takes amateur video of painful lazy eye

I met a delightful person at a conference last year who told me this little anecdote. She has multiple autoimmune conditions, one of which causes one of her eyes to ‘lock up’ – it basically freezes up, while her other eye moves freely. She says it’s quite painful. She could not get this symptom to manifest during her doctor appointments, so she took a number of videos using her mobile phone and brought them to her visit. When her doctors saw the videos, they finally understood (and believed her).

Novel patient creates medication dosing and management google docs

Recently I have had the pleasure of meeting Lauren, a.k.a. ‘Novel Patient.’  Lauren did some google doc spreadsheet wizardry (jujitsu?), and emerged with some incredibly helpful medication management tools. Check out her post ‘10 ways to stay organized with a chronic illness,’ with links to patient tools at the bottom. Her medication list was the ‘best her doctor had ever seen.’ I myself used the template for a consultation with a pharmacist, and it was indispensable.

Insanely awesome science man builds mathematical models to predict his treatment outcomes

John is an electrical engineer who used to work on missiles and radar projects, and who now has  Waldenstrom’s Macroglobulinemia (WM), a rare form of indolent non-Hodgkins lymphoma that affects white blood cells called the B-lymphocytes. The disease is very rare (1,500 diagnoses in the past year), and causes such lovely symptoms as bleeding gums, numbness, and pain. John has used his engineering background to build very accurate models of how often he should get plasmapheresis (plasma exchange) to keep his blood antibodies at a certain level. John told me:

As an engineer, without data we were screwed – it’s the same thing here.  You can’t manage what you can’t measure…I am very data hungry and I can make a picture.  Then I can put it in front a doctor and ask why these things are happening.

He is a true quantified self (i.e. self-knowledge through numbers, check out the site) geek (in a good way). John has found that his doctors have varying degrees of acceptance of his mathematical models, partly depending on their own background; his doctor with an engineering background has been much more open to looking at and helping to interpret John’s data.

The psychological benefits of taking control of your disease can be empowering. John talked about how his work has helped him maintain a sense of control in a situation where he is at the mercy of his illness. He said, “If I didn’t do this, knowing I had an incurable disease with a median survival of 5 years…”

So how can you ‘hack’ your own healthcare?

These regular folks-turned-health care hackers were sufficiently motivated by the pain (mental or physical) of their condition to come up with a solution. All used tools that were free and available to them. How can we be inspired by their stories and use the tools at our disposal to hack our own health? Here are just a few ideas:

  • Creatively communicate your symptoms. Can you think of ways you could use art supplies (paper, pencils, markers, etc), drawing programs or software, photos and videos, or even free sites like pinterest or tumblr to communicate your symptoms to your doctor?
  • Investigate self-tracking. Tracking food, exercise, sleep, mood, etc. has helped lots of people live healthier and happier lives. Check out the quantified self community for ideas for apps and gadgets that can help you get started.
  • Organize your medical info. Yo I don’t know about you, but my medical records and information are basically contained in a disheveled pile of folders and mussed-up papers in the corner of my office. Could you use google spreadsheets to keep track of your blood results? Could you make notes about doctor visits and share them with family members who help you with your condition? Scan documents and store them in dropbox? There are a lot of free ‘project management’ tools out there to help you manage the project of your health.

Do you have more examples to share? I’d love to hear ’em!


4 thoughts on “Patients who hack their healthcare

  1. This is awesome. I’m developing a Self-Stalking Kit that includes a customizable spreadsheet chart for tracking symptoms,moods, actions, behaviors, meds, you name it. I’ve been searching hi and low for an app to handle this for me, but nothing I’ve found offers me the detailed customization as thoroughly or in as broad of a range of categories as I’d like. Creating it myself has been challenging but knowing how valuable having so much data on hand is, especially with a complicated medical history, keeps me motivated. Sooner than later I may actually need to hire someone who can fine tune the user interface to make inputting data as seamless and easy as possible 🙂

    Best wishes in your journey. I, too, have many challenging health issues from a 35ft fall 12yrs ago that broke my back, damaged my spinal cord, and the resulting complications left me with 75% less intestine than before. I recognize the connection you made between gut health and seemingly unrelated joint pain in my own body-thank you for connecting those dots. Doctors never want to admit that gut health is fairly indicative of overall Wellness.

    • Hi, thank you so much for your post! I am so inspired by people like you. I am sorry to hear about your medical problems, but when people like you and me can track and understand our symptoms I think we can live better, calmer lives and feel more in control. I would love to see your spreadsheet at some point. Keep in touch!

      • I lost the original spreadsheet that I actually used pretty consistently for a year or so when my computer crashed. I hadn’t learned the importance of back-ups yet 😉 I’ve bookmarked the site, but if you have any mailing list, please go ahead and sign me up. I absolutely believe that when we track our symptoms and even just normal day-to-day activities and emotions we can learn invaluable information about ourselves. It’s always a good laugh when I show I new doctor the records I keep and their jaw just drops like they’ve never seen a patient care so much about their own health. The way I see it, though, nobody is coming to rescue me and it’s up to me to take care of my own health. The more a doctor has to work with, the more accurate his diagnosis can be.

      • I really love your last commment:

        The way I see it, though, nobody is coming to rescue me and it’s up to me to take care of my own health. The more a doctor has to work with, the more accurate his diagnosis can be.

        Sometimes I think we as patients are encouraged to ‘give up control’ to our medical team – much in the way people say ‘let go, let god’ to addicts or people going through difficult times. But when we give up all control, a few things can happen. We might be opening ourselves up to medical errors, which we might have caught were we more vigilant; we also might miss those vital connections that we might have otherwise made if we paid closer attention to our bodies. I feel strongly that we should be helped into a position of control, instead of being infantilized and made into passive patients. Thanks again!

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