Smiling on the inside

For the past 21 years, my heart has become heavy with dread every time I have to have my photo taken.  I hate Skype, because there’s nothing else for people to do but look at my FACE!  At my wedding it was nerve-wracking and terrible (while simultaneously joyous, of course) to walk down the aisle between clusters of friends and family with their beaming faces and happy eyes. Everyone was smiling, and I should have been too.

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).

challenge_weak_smile

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.

photo (3)

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.

reginaHollidayJacket

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.”

Health Design Challenge: One gal’s perspective

Last month, winners were announced for the Health Design Challenge, a contest put on by the ONC (Office of the National Coordinator for Health Information Technology) and VA (US Department of Veteran’s Affairs) that asked entrants to rethink the patient medical record. From the challenge’s site:

“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.
    Screen Shot 2013-02-20 at 6.54.10 PM

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:
    Screen Shot 2013-02-20 at 9.02.03 PMTeam 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).
    Screen Shot 2013-02-20 at 9.20.00 PM

    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.
    Screen Shot 2013-02-20 at 9.52.35 PM
  • 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).
    Screen Shot 2013-02-20 at 9.28.31 PMThis 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:
    Screen Shot 2013-02-20 at 9.36.55 PM
  • 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.
    Screen Shot 2013-02-20 at 7.10.54 PM

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:

Screen Shot 2013-02-20 at 9.02.28 PM

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.

Screen Shot 2013-02-20 at 9.19.44 PM

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:

Screen Shot 2013-02-21 at 7.10.27 AM

One more from team Medical Chronicles; not sure how usable this would be, but it’s yet another time-based entry.
Screen Shot 2013-02-20 at 9.35.46 PM

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:

Screen Shot 2013-02-20 at 9.03.36 PM

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):

Screen Shot 2013-02-21 at 7.14.14 AM

(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:

Screen Shot 2013-02-21 at 7.18.25 AM Screen Shot 2013-02-21 at 7.18.15 AM

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.

‘Healthcare’s Trillion-Dollar Disruption:’ A layperson’s summary

Dave Chase, CEO/Co-founder of Avado, wrote an article a few weeks ago on Forbes that had a lot of patient-centered healthcare entrepreneurs and enthusiasts pretty excited. ‘Healthcare’s Trillion-Dollar Disruption,’ written in Chase’s fast-paced style, is dense with stats and examples of how the healthcare industry will be disrupted.

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.

Visualizing the healthcare ecosystem

I just love visualizing information. Visualizing complex information always helps me understand it better, and I usually end up learning something new. Last fall, I was working on a way of creating a way of helping patients visualize their medical histories. I realized that in order to understand how any healthcare product or tool could fit into the healthcare ecosystem, I would need to try to understand that ecosystem. So I mapped out what I knew. I am sure it’s very rudimentary from an information standpoint; the connections are dependencies are somewhat glossed over. But it did help me understand what I was dealing with and identify pain points and opportunity areas.

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.

healthcare_ecosystem_012213

When I am the steward (a haiku)

When I am the steward

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.

Medical tourism at Cleveland Clinic: an e-patient’s perspective

This past week I took a road trip through the heartland of america to visit Cleveland, site of world-renowned medical center Cleveland Clinic. I was there to see 4 specialists and 1 internist over the course of 2 days; the goal was to outline my medical issues & mysteries and see if these doctors had any fresh perspectives for me. A family friend gave me special access to a program that planned and coordinated my visit; through this program, the doctors that I saw would all come together to discuss my case and put forth recommendations for my continued care. I was very excited to witness and document this model of care, as I know it’s very rare for doctors to really come together around a patient.

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 

Image

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

 

On the difficulty of obtaining 20-year old medical records – and the emotion and enlightenment therein

In preparation for a visit in a few days to the Cleveland Clinic (to see a host of specialists about ongoing medical mysteries – follow-up post to come), I requested medical records from the U of Michigan hospital system dating back to when I was first diagnosed with Myasthenia Gravis in 1992.

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.’

Image

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.

ImageAs 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!

Image

Also, “The mental status is entirely normal”:

Image

Classic quote!