‘Hi,’ I said.

Then I launched into my presentation, ‘Help me visualize my damn data,’ at the eyeo data visualization/creative coding festival in Minneapolis. It was an ignite-style talk, meaning I had 5 minutes to talk and my slides would auto-forward every 15 seconds. It was organized by Brady Forrest, who wore a sassy pocket kerchief; he is the guy who invented ignite talks and made them cool.

There was kind of a lot riding on my presentation. I spoke to a crowd that included the best data visualization experts, the most creative coders, heroes and pioneers and the folks who love them. The audience seemed to be, at first glance, a sea of young white men with trimmed beards, black hoodies and fashionable glasses, with a few tattooed, cyber punk ladies interspersed. I spoke on the first night of the conference, meaning if I messed up, people would be giving me sidelong pitying looks for the rest of the week.

I tried to put all of that out of my mind. My biggest worry, as always, was that my voice would give out from Myasthenia Gravis weakness. My voice strength can fluctuate by the hour, or even by the minute, so I can never be completely sure how I’ll do. Fortunately, I had pre-recorded two slides just over halfway through my talk, so I could give my voice a rest.

I went into ‘speech blackout’ mode and recited my talk out of pure muscle memory. I talked about my medical timeline, about the other patients I’ve found who are visualizing their data, about my work with Medical Avatar, and about some key opportunities for data visualization in healthcare. The last few words were difficult to get out, because my voice had in fact just about collapsed. But I said it…’I hope you’ll consider helping patients like me visualize…our…damn data.’ The crowd cheered, I stepped down, and collapsed into my seat. Whew.

After the talk, people poured into the gallery, and that’s where it began.

Someone would materialize out of the crowd and stand nearby. Look at me, look away. Take a breath, let it out. Then come haltingly into my immediate radius and shake my hand and say I really liked your talk. Then they would lean in a little bit, lower their voices, and tell me secrets.

I also have…

My wife has…her doctor asks her to keep a journal but…

My daughter…I wish I could do something to help her…

I’ve thought of doing something like you’ve done…

The pain was so strong I had to quit school….

No one knew what it was…

I can’t figure out what’s causing it…

My husband has tried everything…

They murmured their fears and frustrations, and we together we spoke a language that many of the healthy people at the conference wouldn’t really comprehend. No matter how short the exchange, their stories became lodged a little bit in that place in my chest where I collect them. I imagine the patient stories living in that place, swirling and tumbling and wrapping around one another.

Even if I never really got their name, my heart and their heart became connected by a thin, gauzy strand. I collected these silken heart strands over the course of the conference. The strands are invisible, but here I will color them red since our hearts flow through them.

Something is happening with our heart connections. We are creating a network, not only of empathy and support, kindness and pain, but also of bravery.

One person’s audacity ripples through the network and helps others comprehend what they are capable of. Each person radiates and vibrates with strength, and our auras link and intertwine until they become a weblike scaffolding, a densely-knit layer, that holds us together and keeps us upright.

I wouldn’t have had the honor of making these heart connections and holding these stories in my chest if I hadn’t spoken up.

Because I can’t help myself from trying to create some kind of order out of chaos, I started to try to associate the grey satellite symptoms to either the ‘Bad guts’ or the ‘Weakness’ mother ships. I realized quickly that nearly all of them landed on ‘Bad guts.’ Then, I coded in whether the symptoms were made worse by humidity (water drop icon) or by sugar/carbs (weird candy icon.) Here’s the organized, more meaningful diagram:

Hey, now we’re getting somewhere! I am not sure what the causal relationship is for many of these symptoms, but I do know that there is an association between them. For instance, when I am in a period of excellent guts, I do not experience sweet breath, red dots on my feet, heart palpitations, burning lower back, or peeling skin.  I like this new way of looking at my symptoms, and I think I’ll bring it to my next ‘new doctor’ appointment – though this time, it’s with an herbalist. Should be interesting.

Much of the time, I can’t smile very well, and that has been by far the most challenging manifestation of my autoimmune disease, Myasthenia Gravis. The disease causes weakness, mostly in voluntary muscles. My face is affected; in addition to my weak smile, sometimes I have droopy eyes or double vision, and often I have a hard time speaking for long periods.

I gravitate toward sardonic, humorous, somewhat deadpan friends, both because I share their humor and because they don’t demand as much smiling from me (except when I laugh at their jokes, which I will often do behind the shield of my hand like a giggling Japanese girl).

I’ve seen worse, I’ve seen better

One time, we were taking a family photo and my step-grandpa was behind the camera. He kept asking me to smile harder – bigger! You can do better than that! Just try! And of course I ran to my room crying. I was probably 20 at the time. It’s been a longstanding emotional issue that I’ve never really addressed fully over my years with this disease; something on which I have tried not to dwell, but something that constantly plagues me.

A year ago, I attended the Healthcare Experience Design conference in Boston. I saw the artist Regina Holliday speak about her husband’s cancer, terrible care experience, and subsequent death. She showed an image of her redesign of the ‘pain scale’ – which used representations of the patient’s face depicting a spectrum of emotions to show how they were feeling. Her slide brought to the surface an idea that had been bouncing around in my mind for awhile: what if I took photographs of my face and smile at varying levels of severity and used it to show my doctors the full spectrum of my symptoms?

I walked up to Regina after her talk, where she was painting on an easel in the corner of the conference venue, and told her I was very inspired by her art+advocacy work. I ended up telling her a little bit about my story, and as I talked about my smile, the tears started to fall. This powerful woman took my hands and looked into my eyes and I can’t even remember what she was saying but it was something to the effect of, ‘you can’t let it silence you, you need to speak up and help people’ (or at least that’s what I took out of it.)

That summer, I decided to go ahead with my idea – to take a photo of my smile every day, no matter what. It was scary, because I didn’t want to see how bad my smile looked.  I used a private tumblr blog and iOS app to take the photos, and I made notes about what the day was like, what the weather was like, whether I was tired, etc. I did this for about a month and a half, and the results floored me.

For the most part, my smile did not look as bad as it felt. When I felt like a grimacing dog, I looked like a mildly pleasant – if slightly standoffish – young lady. Sometimes I really did look terrible, but not as often as I thought. I started smiling when I was alone, on my walks and runs in the woods, in an attempt to strengthen my face muscles.

Last fall, I put all the smile photos into an album on my iPad and organized them on a spectrum – from weakest smile to strongest smile. I brought them to my first visit with a new doctor here in Burlington – a young, fit, superman-resembling neurologist. They were really helpful during the visit, as I was actually feeling very strong that day, so I was ableto show him what I looked like when I was NOT strong. He appreciated it, and he could better understand the breadth and occasional severity of my symptoms.

So now the Healthcare Experience Design conference is rolling around again. I am presenting a patient panel next Monday that will highlight ‘Patient Innovators.’  For the occasion, I sent Regina Holliday a suit jacket so that I could become a part of her Walking Gallery – a series of jackets on which she has painted the health ‘story’ of the wearer-  to be worn at healthcare events and conferences as a means of raising awareness. I didn’t tell her what to paint, but I shared my story with her and sent some photos.

She created the most magnificent painting I could imagine: a jacket named ‘Quantified Smile‘ that depicts my face in different states of smile-strength, along with a representation of the health history timeline I had put together in an effort to better communicate about my health story. All of it is in the context of a google search. I’d say my smile is my kryptonite, or maybe it’s my achilles heel, but I’m so proud to wear this jacket on my back and I will be happy to explain its meaning to the people I meet. This jacket is a way to confront my smile head-on, instead of making deadpan jokes or hiding behind my hand.

Mostly, I feel proud to return to the conference this year as an active participant, as a UX designer who is now completely focused on improving healthcare, and of course as a member of the Walking Gallery. And I know that even if my smile isn’t the best, I’ve learned that it’s not usually as bad as I think, and I hope that I project my inner smile through my voice and eyes – as an amazingly smart person told me last year, “I find you very adept at expressing joy.”

“ONC & VA invite you to rethink how the medical record is presented. We believe designers can use their talents to make health information patient-centered and improve the patient experience…. Innovators will be invited to submit their best designs for a medical record that can be printed and viewed digitally.”

This contest was an exciting opportunity for designers from around the country to contribute their time and creativity to help make health records more patient-oriented. The winner’s gallery (the best way to browse the entries, in my opinion) is an impressive collection of well-executed, eye-pleasing health record concepts; and some components of these designs will eventually become part of the VA’s actual health record system.

Personally, as a patient, UX designer and data visualization enthusiast, this contest was one of the most exciting things to happen this year. I didn’t submit an entry, but I pored over the submissions and would like to comment on some of the trends I saw.

User-centered design

I saw some great use of methods often employed by those working in the field of User Experience, like extensive user research, some great ‘experience strategies,’ personas, etc. Here is one quick highlight:

• Personas
  The winning entry, Nightingale, introduces two personas: Ellen, the patient, and Gene, her caretaker. On each page of the design document, the designers feature Ellen and Gene and talk about how the design helps them accomplish their goals. This is a great example of a strategy for keeping patients at the forefront of the design team’s mind; develop detailed personas, get to know them like a friend or family member, and find creative ways to bring them along throughout the design process (almost as a member of the team). I loved the impact that this had; I also loved the cute watercolor effect.I recommend downloading the final PDF if you’d like to see more detail on how this team weaves the personas’ stories through the document.
  

Data visualization
One means of making complex information easier to understand is to visualize it. Our medical records contain complex information like lab results and histories, general medical histories, problem lists that have evolved over time, demographic and lifestyle information that has evolved over time, allergies and sensitivities that may come and go, etc. Some entries were more successful than others with regard to visualizing information, but the spirit making complex data more scannable and understandable through visualization is on-point. In fact I think I could write a whole post about the data visualization I saw in the challenge entries.

Just a few of the more successful examples included the following:

• Lab results (context: where my result falls within the spectrum)
  The Blue Button / Method team had a nice example of this:
  Team Grouping by Time had an interesting layout; though I am curious how it would fare in a black and white printed format (that’s true for many of these though).
  
  
  I was inspired by team Stay Well‘s lab summaries (which took 3rd place in the Lab Summaries); I liked their emphasis on the result number and location, and the way they minimized the visual weight of the lab result range.
  
• Overall picture of my health
  I was excited to see two acquaintances get recognition for their entries; my Internet friend Dan McGorry‘s team Health Summary (from HealthEd) won for best lab summaries, but I think what’s interesting is the radial map of your health that they present (here shown with labels pointing to the icons).
  This was a work inspired by the folks over at Involution Studios (Including my conference friend Juhan Sonin), whose hGraph has a similarly radial shape and attempts to communicate ‘overall health;’ their submission garnered an honorable mention:
  
• My “problem list”
  Studio Tack’s 2nd place overall entry included an interesting body-based visualization that highlighted the organs and body parts that were affected.
  

Time as an organizing principle
I believe that one of the most difficult visual problems in this exercise is representing information that has changed over time; this becomes especially challenging when we are talking about trying to represent that information in the static, printed format. A few entries used a timeline view as an alternate way of exploring the medical history. A timeline is intuitive, and highlighting key moments in time may be a great way to help patients locate and share information with others. If it could be better adapted to the printed format (in other words, making decisions about what information to include in the printed format to avoid an enormous data dump), this concept could really help patients get a handle on their personal history and communicate about it with others. And full disclosure, I have a special interest in the timeline format.

An example from the Blue Button / Method team:

Next, from the Grouping by Time team, who presents a somewhat confusing horizontal summary at the top (circle icons for the number of items in the list are identical to the age indicators over to the right), but then has a very clean history layout below.  I like how they are pulling out and highlighting key moments in the history.

I liked the example below from Khyati Trehan, but I suspect it would be very difficult to automatically generate something like this and still maintain a legible output:

One more from team Medical Chronicles; not sure how usable this would be, but it’s yet another time-based entry.

Portability
Many of the entries included designs for paper print-outs that patients could keep on their person/in their wallet. I love this idea. Just last week, Seth Godin advocated on his blog post ‘The simple form that could save your life’ for everyone to keep a paper version of their medical history in their pocket. The paper examples from this challenge are really nice, though some of them do have limitations:

• Some assume that patients will have a nice color, double-sided printer
• Some of the more subtle visuals will become difficult to distinguish in a black and white printed format; for patients with some visual impairment, greyscale designs may be even more difficult to discern. Some of the entries included black and white variations to show off their design’s printed effectiveness.

From the Blue Button / Method team:

The next example from team Accordion Mailer was intended to be a mailer – so patients wouldn’t actually have to be the ones to print this out (good thing, because it appears to be on gorgeous card stock):

(Thanks Jeff Kellum for the link to the above example.)

One more great example from team SOYO (also from HealthEd) that is printable and simple, would still be effective in black and white, and which includes instructions for assembly:

Anyway, speaking of portability, there were some great mobile designs and I even saw one responsive web prototype (Healthee, built by some kind of young, multitalented wunderkind doctor); but overall there were many entries that did not account for mobile at all. This is a huge opportunity area; providing access via mobile lets people access their info anywhere, anytime.

What’s next
This challenge was a great first step. Patients can obtain their information in a clean, easy-to-understand format; they can get more context and information around things like lab results and medications; they have a new tool for sharing information about their medical history. But this challenge was quite focused on the static information download or ‘view’ mode. How could we push this further?

• Give patients the power to add information to their own record
• Let them identify and flag errors
• Get into the nitty-gritty interaction details; for example giving patients a legible high-level overview and letting them dive into their own details and history
• Let them explore contextual information related to their conditions, lab results, medications, etc (e.g. ‘learn more about this blood test’)
• Ensure there is full access and functionality via mobile devices

I’d love to hear your thoughts. I barely scratched the surface of the awesomeness contained within the entries; I encourage you to delve into them with a hot cup of coffee and a fresh powdered donut.

Chase covers a number of topics with relatively broad strokes in this short article. After I shared this article on Twitter, Brian Scott Edwards (@brianedwardsmd) wrote that it was a bit complex and a layperson’s summary would be nice. Because I happen to like a challenge, and because I appreciate the opportunity to marinate in Chase’s fierce intelligence for a brief while, I present you my bulleted version of his article. Most of the text below is simply copied and pasted from Chase’s article and shuffled around, with some of my additional commentary and paraphrasing.

The Disruption

• “New patient-centered population health models will cause more than $1 trillion of value to rotate from the old models to the new and create more than a dozen new $10 billion high-growth markets.” (Tom Main and Adrian Slywotzky)
• Rather than trying to steal share from the big guns, startups should focus on creating the new market space, and the market will move to them…not the other way around.

There will be 3 waves of disruption:

• Wave 1: Patient-Centered Care (2010-2016)
  “Five percent of Americans account for 45 percent of healthcare spending—$1.2 trillion[…]If we simply mainstreamed today’s best-in-class models of patient-centered, population-health management, the U.S. health system would eliminate nearly $350 billion of low-value-add activity and shift another $600 billion from provider-centered care models to patient-centered care models.” [pages 5 and 7, "The Volume-to-Value Revolution"]
• Wave 2: Consumer Engagement (2014-2020)
  Chase doesn’t go into detail on this one, but presumably engagement is referring to cost transparency, increased choice, increased ownership over & access to one’s medical information, etc.
• Wave 3: The Science Of Prevention (2018-2025)
  This is also not covered in any detail, but this could include genome sequencing or implantable devices – ways of providing people with more data about their own bodies to help them and their providers make better choices

The means of and opportunities for disruption

Moving beyond the old legacy systems
Chase uses the word ‘preservatives’ to describe any of the diverse entities in healthcare who are trying to protect the status quo; who are trying to preserve revenues and who don’t have an incentive to make the switch to improving outcomes. Think, for example, about a big, complex, legacy EMR system. He says, “These older systems were optimized for internal workflows and maximizing billing since that is what has been rewarded historically.” But new incentives and rewards based on preventative care, efficiency, and patient engagement mean that these old legacy systems will quickly become inadequate.

In addition, providers are choosing cloud-based systems over on-premise software to drastically reduce the time and money required to implement these legacy systems. Chase says, “we have seen a small clinic get their cloud-based system fully setup and ready to use in 30 minutes without any onsite support.”

Stepping up consumer empowerment
Chase makes a few points throughout the article about consumer empowerment and choice: “Most industries compete on value. U.S. healthcare does not. [...] The consumer empowerment and choice that exist in everything from buying cars to planning travel is finally arriving in healthcare, nearly 15 years later than most industries.” He also cites the Introduction of the Volume-to-Value Revolution: “Consumers, long passive, will have a new role. Employer incentives, retail access, and new technology options will encourage them to engage, demand information, and push for value.”

Moving from reactive to proactive care
“Many are predicting half of hospitals will close by 2020. In Denmark, nearly 70 percent of hospitals closed as they made the shift from a reactive, sick-care model to proactive care model. More clinicians than ever will be needed. They’ll simply have a mainframe-to-smartphone like shift.”

From patient portal to Patient Relationship Management
The current patient portal model is outdated and is akin to pre-Google web search; a “sophisticated patient relationship management system (PRM) will become a linchpin of healthcare delivery.” (A point close to my own heart, for sure.)

Compensating doctors based on new metrics
Doctor compensation is changing. How well doctors communicate with their patients is going to be a performance metric; and doctors will demand technology-aided communication for convenience and efficiency.

———

Fin. I think this article was very powerful because it provides justification, rationale, and stats to support the patient-centered work in which so many entrepreneurs and patient advocates are engaged. It is a shout out to the disrupters, encouraging them and giving them a glimpse into a future in which they’ve won; in which patients have become more empowered and central to the health care delivery model; in which doctors and patients optimize technology for collaboration and communication; in which needless spending is eliminated; and in which systems aim to increase patient wellness instead of patient billings.

I now share it with you, in hopes that a) it could help others, or b) people will offer ideas for improving the diagram. Click to enlarge.

of my own health info

everyone wins

Ok it’s not a real haiku. It’s a false haiku. But I composed it just now, while walking home in the driving sleet from an appointment with my new, fabulous local neurologist.

The visit was a case-study in why patients should own and be stewards of their health information. Here’s what I brought to the visit, in a martha stewart-branded folder (that retro pale green color she seems to favor):

• my health history timeline, of course
• photos on my ipad of my symptoms at their worst, and at their best
• all of my lab test results from the past two years
• a list of my medications: dose and frequency, reason taking, who prescribed (taken from the very helpful template over at NovelPatient)
• medical records from my neurological diagnosis, including exactly how the diagnosis was made
• a list of my current symptoms and questions for the visit
• a summary of my recent self-tracking data and findings
• records from my past 2 years of neurology appointments

What happened:

• The doctor loved the timeline
  He said he’d never seen anything like it in his years treating patients with my condition, and he thought it would be very helpful for other patients to have their own timelines. As in other recent visits, I used it to walk him through the major neurological events in the course of my disease – crises, medication changes. It was a very efficient way for him to get a picture (literally) of my history. A benefit was that my gut timeline was there too, so he could see the interplay between neuro stuff and gastro stuff – which usually isn’t that easy. He asked if he could keep the timeline. “It’s for you,’ I said.
• I could show the full range of my symptoms, even ones I wasn’t having at the time
  Using my iPad, I browsed through a gallery of photos I had created that shows a continuum of my symptoms from their worst to their best. I showed where my ‘average’ was. This was very helpful, because earlier today I was feeling very energetic and strong, for some reason; so I wouldn’t have been able to show my ‘weak’ self to him if I hadn’t had the pictures on hand.
• Bringing my lab results meant that I was able to avoid getting duplicate tests performed
  I brought all of my lab test results from the last 2 years. Looking at them, the doctor decided not to do certain tests because he could see they were just recently done. He could also see evidence for some of the things I was telling him, like a new diagnosis that is pending – which is always helpful.
• I was able to contribute new information for my medical record
  Recently I requested my medical records from when I was first diagnosed with Myasthenia Gravis, about 20 years ago. By poring through these old records, I was able to find the information about exactly how I was diagnosed – what tests were done, what the measurements were. I added this info to my timeline, and shared it with this new doctor. He said they didn’t have that diagnosis information on file for me, even though I had transferred my records over when I had seen his colleague in the early 2000s. Having this information helped give my doctor confidence about my diagnosis, so he didn’t feel the need to put me through painful diagnosis procedures (like my nemesis, the EMG).

Who were the winners?

ME:

• I felt in control of telling my medical story, and I felt like I did a good job of painting a rich picture of my medical history
• I felt listened to and understood (largely due to the awesomeness of the doctor)
• I saved myself the time and money of doing extra procedures and getting extra labwork done

MY DOCTOR:

• He got an ‘at a glance’ view of my illness; he ramped up on my history quickly
• He got visual as well as oral information, making everything easier to comprehend
• He got a lot of information that was not in my medical record with his office and that I would not have been able to tell him if I didn’t own my medical records

MY INSURANCE

• They saved $ by not having to pay for a portion of repeat bloodwork and tests

Everyone was a winner! And that made me very glad.

Perks of preparedness

Having made the appointments over 2 months before my visit, I was very concerned with doing all I could to prepare. I would be spending considerable time and effort (and money) on this trip, and I wanted to get the most out of it. I probably spent 10-15 hours preparing in advance of my visit. I did the following:

• Paid over $50 to obtain my records in PDF format from the University of Michigan – where I was seen for neurology stuff from 1992-2010, and gastro stuff from 2008-2010. I put these records on my iPad so I could easily access them.
• Put together all of my test results from the past 2 years in a folder
• Assembled a folder for each specialist that included any pre-visit questionnaires they had sent me, plus a print-out of my major complaints and thoughts related to each specialist
• Printed out 3 huge copies of my medical history timeline, probably 5 feet wide each, which was a bit unwieldy but did make the timeline very legible. I folded each one up accordion-style and put them in the specialist folders that I thought would be most interested – neurology, gastroenterology, and internal medicine.
• Bought a big binder to carry all my folders around with me 

The visits were good – some more illuminating than others. The timeline was most useful for the neurologist, gastroenterologist, and internist, as I had anticipated. The neuro and internist especially took a lot of time to look at it and ask questions about what happened when – trying to learn all about my story. The gastro wasn’t as meticulous about asking questions about my history but he said it was ‘the coolest thing ever.’ Overall the timeline helped the doctors get a good idea of the arc of my illness, and it helped me remember specific events. Success!

I found that my extreme preparedness made my visits go very smoothly – I was able to answer almost every question the docs had for me. It was awesome to be able to pull up a 20 year old pathology report from my thymectomy, details about my autoimmune diagnosis, and the results of other procedures, right on my iPad. I also was able to pull up some pics of my symptoms, which was helpful because certain problems weren’t manifesting at the time. So between that and my ‘binders full of medical records’ from the last few years, there was hardly a question I couldn’t answer. Hit me with another! I was on fire. And most of the doctors commented on my preparedness, thanking me for being so organized.  

Although I consider the communication between me and the doctors a great success, I’m not sure yet how much value I got out of the visit as a whole. I have a bunch of tests still outstanding so we’ll see if anything interesting pops up. There’s a chance that I won’t learn anything groundbreaking, which makes me feel sad, but regardless it is always good to get a fresh set of (10) eyes on my situation. 

Was it really patient-centered?

Overall I had a pretty good experience, and the Cleveland Clinic is probably one of the best hospitals I’ve visited when it comes to finding your way around, natural light and soothing music, etc. It was a good user experience with regard to the physical environment, though so much more should be done to help diverse disciplines share info across their systems. I had to tell my story 5 different times for 5 different doctors; I had to get weighed and measured 5 times; I had to answer the same 10 basic questions for each doctor. They did have access to each other’s notes and lab orders via their EMR (Epic), but I didn’t see any of the docs actually read each others’ notes during my visits. 

One misconception I had going into this set of appointments is that the doctors would all huddle up and discuss my case as a group. In fact, this doesn’t happen; instead each specialist will write follow up notes, which the internist then receives and compiles into a letter. I think she then follows up with them if she has questions. That was a little disappointing, knowing that with the exception of the internist, each specialist still sees me  through a completely separate and almost mutually exclusive lens. 

So no, I don’t think the visit was really patient-centered, though I am very grateful for the program that coordinated my visit and for the internist who will compile findings. 

Big takeaway: patients gotta step up

My major takeaway is that the patient must take a lot of responsibility for curating their medical history; for knowing how to find certain pieces of information quickly; and for putting information in an easily-digestible format. This makes the patient’s visits more productive, and it helps the doctors learn more efficiently. Patients want to help, and our medical system must give them the tools & access they need; instead of charging me $50+change for my records, for example, what if I could have had them for free? Don’t get me started. 

I also learned that it’s extremely difficult for doctors to actually assemble around a patient and talk to each other in real time. They are running from visit to visit, and there’s not room in their day (nor is there probably compensation) to add additional group meetings centered on one patient. Therefore, again, the patient has to take responsibility for being the “connective tissue” between the specialists. 

Fin

Requesting one’s medical records for one’s own purposes is not always easy and certainly it is not incentivized in any way. In fact I had to pay just over $50 for access to my records, while it would have been free to have them faxed or mailed to any doctor for the purposes of ‘continuity of care.’

This is ludicrous! My purpose for obtaining my records was to have more complete continuity of care; Instead of having to order and send my records to every new neurologist I visit, I want to be able to bring my information along with me. I want to own it. I want to be able to open my file and say ‘here, the answer you’re looking for is contained within this letter which was typed on a manual typewriter in 1992 and which contains all of the information about my diagnosis.’

I want

to help them

believe me

—

I WANT TO HELP!

—

Today, just in the nick of time, my records were delivered electronically (after I paid the fee). I opened them up and scrolled through, and started reading a progress letter written from my beloved old neurologist to my pediatrician back in 1992.

As I read, inexplicably, a few tears escaped from my eyes. I thought about this and realized that this letter was giving me a window onto my past self, that 14-year old girl who was terribly embarrassed about her chest scar and who used to have a hard time brushing her hair in the morning because her arms were so weak. I felt a tenderness for that skinny, freckly girl with braces who somehow kept playing on the basketball team even though she wasn’t strong enough to shoot a free throw in the summer of ’92. I felt grateful to have the opportunity to peer into this medical version of my past (at a price, of course).

I also learned by looking at my records that some of my GI issues that I thought were new, have actually been plaguing me since the 90s. I guess I blocked it out; if I hadn’t obtained my own records I wouldn’t have recognized that trend.

One awesome thing about the records was that the letters were literally typed. Typos were made in pen. Amazing!

Also, “The mental status is entirely normal”:

Classic quote!

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!