Ode to Stanford Medicine X e-Patients

As an ‘e-patient’ attendee of the Medicine X conference this year, I had plenty of opportunities to really connect with you other awesome patients. We ate together, chatted at breaks, and commiserated, and as I got to know you casually, I was simultaneously hearing your ‘official’ e-patient stories as one by one you took to the main stage to give ignite talks and appear on panels.

Your stories were raw and painful. You talked publicly in front of an exclusive in-attendance audience (and, because the talks were streaming online, a world-wide audience) about the parts of your lives that were most difficult; that you may hide from friends and co-workers. You were poised, eloquent, moving, articulate speakers, speaking not only about your difficult journeys but about how you’ve coped and taken charge of your situation. I appreciated the opportunity to listen and empathize; I found myself crying during most of your talks.

It is one thing to hear these stories from the stage; to hear the emotion in your voices and to cry with you. But it is another thing to witness up-close your swollen and painful legs; your inability to hold a cup at a coffee break, both cases of severe arthritis. To observe you struggle with multiple breathing crises related to your autoimmune disease (which we share.) To see you two seats over from me coughing and coughing and wondering whether I should go get someone. To read the discomfort on your face, as your prosthetic leg started pinching after hours on your feet.

What I realized is that I have been walking around in a protective box that has often kept me from really – really – empathizing with you. Probably many of us walk around in such boxes. I guess the walls of my box are there partly because of technology and physical distance – the things that keep me from seeing your day-to-day experiences. The walls are also protective and serve to help me maintain some sense of ‘normalcy;’ and anyway, it would be exhausting to constantly feel others’ pain.

in_box

But what I found during the conference is that the walls disappeared, and I was suddenly face-to-face with what it really means to live as you. Which cut into something under the surface, and peeled open some of the feelings I usually keep locked deep inside.  My heart felt heavy and sad at times.

But another thing happened – a collective lifting up. It happened when you (literally at times) carried each other through your painful symptoms; it happened when you listened to each other’s stories and realized you are not ever alone again.  You showed how you’ve innovated; hacked; crowdfunded; organized people both online and off; created something out of nothing except the force of your will and your desire to help another patient. You are powerful, proud, triumphant, and honest while being vulnerable. You made me believe that anything is possible, and you made me understand that I can’t wait around for someone else to do it, that thing, that ‘idea.’ In fact, some of you may not have much time left, so if I want to help you, I’d better hurry the hell up.

Walking away from the conference your emotions were probably a little haywire, if you were anything like me. The good and bad, hopeful and depressing were all swirling around in a confusing fog, and my body and mind were tired, and I found tears spilling down my cheeks at strange moments – on a train – looking out a window – walking down a sidewalk.

But overall, I found that the lightness canceled out the heaviness, and what was left was our strength and purpose and my favorite thing of all – our connected web of hearts, held in the balance by support and love.

web3

yes, i stole that last image from this other post. eternal gratitude to Larry Chu (and staff and helpers and e-patient advisors and everyone)…but especially to Larry for his vision of putting patients at the center of a medical conference; truly revolutionary. 

Why we need to move beyond the term ‘Patient Engagement’

The first few times I saw or heard the term ‘Patient Engagement,’ I had a neutral – or even slightly positive – reaction to it. If patients are engaged in their own healthcare, that can’t be a bad thing, right? But over time, the use (and overuse) of the term has begun to grate on my nerves, and I’ve noticed other patients and patient advocates similarly expressing their dissatisfaction. I’ve set out in this post to explore and crystallize my thoughts about exactly why we find use of ‘patient engagement’ to be misguided, and perhaps even offensive.

* * * * *

First, how are people talking about patient engagement? Here are a few general ways I’ve seen people using the term recently (not verbatim, but the gist):

  • Our product is a patient engagement tool that will help you meet meaningful use requirements
  • If only patients would get more engaged, they wouldn’t be so unhealthy and our country wouldn’t be in this healthcare mess
  • Patient engagement is the goal of our app
  • We are offering a clinic/session/seminar on patient engagement to help you improve your practice
  • Our patient engagement product improves medication adherence and patient compliance

Ok, so the next step is to examine who is using this term:

  • Companies and entrepreneurs who are selling a product
  • Institutions and individuals whose compensation depends on patients being more compliant
  • Well-intentioned organizations and people who legitimately want to improve healthcare, but who may lack a clear and specific vocabulary to express the difference they want to make

Who is missing from this list? The same folks who are missing from many healthcare conversations: patients. The term is most often used by those talking ABOUT patients, not WITH patients.

* * * * *

Why isn’t Patient Engagement effective as a term? Let’s break it down. I asked a few smart e-patients who have or will attend the Stanford Medicine X conference what they thought about it, and their answers have helped shape my points below.

1. It’s too vague

What does this term actually mean? Everyone seems to have a slightly different definition. Because it’s so vague, patient engagement should not really be any person or company’s objective. It’s like having a goal of ‘being more motivated.’ You can’t put your finger on it; you can’t measure it; it encompasses many different aspects of self-improvement.  It doesn’t really make sense.

Likewise, the fuzzy meaning of ‘Patient Engagement’ conceals important concepts and goals that we should be talking about more prominently. I’ll discuss these in detail below.

2. It implies patients are not already engaged, creating an atmosphere of blame 

When I asked patients what they thought of this term, and their responses were almost uniformly defensive in nature; this tells me that this term is talking AT patients and not WITH patients. It implies that patients are non-compliant; it implies that ‘getting patients engaged’ is our big goal, which as we have already seen is a weak and immeasurable goal. As e-patient Laura Kersting Barre put it:

“I think every patient is “engaged” at some level. Being engaged can vary between and within patients depending on the circumstances. The current use of the term “engaged” implies that there are patients that are not engaged. I disagree strongly with this – what patient is not engaged with their own illness – they live with it and they have come to an appointment.”

From e-patient, Jamia Marisha Crockett:

“I don’t want to be engaged…I want a partnership with my healthcare team.”

3. It’s paternalistic

The term implies that if patients would only do what we told them to do, they could improve their situation. As Nick Dawson said:

“…Most often when I hear engagement its from an organization or individual who wants patients to do what they say and behave according to their definitions of healthy behavior. At its worst, it used as a proxy for loyalty to a specific provider or system.”

4. It’s a buzz-phrase that is used as a selling tactic 

Looking at the entities who are talking about Patient Engagement, one can quickly see that it’s very often used by companies who are trying to sell a product to ‘payers’ or ‘providers’ (to throw a little industry jargon in there.) The aim is to decrease the burden on the payer/provider system through reduced office visits, medical errors, duplicate procedures, reduced time to diagnosis, etc – all of these things facilitated by ‘engaged patients.’ Patient Engagement is so overused as a ‘key value proposition,’ as a brand promise or claim, and as a selling tactic that it cannot possibly differentiate any product from another.

5. What about provider engagement?

When we talk about Patient Engagement, we are leaving out a vital 50% of the care relationship: providers. As Laura Kersting-Barre said:

“We also need to give equal weight to provider engagement. I have seen a few providers that were much less engaged in my treatment than me.”

As another said about providers:

“Are they aware of groups like this, events like MedX, services like 23AndMe, gadgets like Fitbit, tweet chats, etc? Are they practicing empathy and seeking to truly understand the life goals of their patients? Are they actively seeking ways to overcome traditional barriers like HIPAA, wRVUs, etc? Some certainly are, but isn’t it a bit hypocritical for providers and health systems to talk about engagement when they themselves have a lot of work to do?”

We talk often about behavior change, but usually it’s in relation to patients; however there’s certainly behavior change that needs to happen on the provider side if we are going to revolutionize healthcare.

* * * * *

What are we really hoping to accomplish when we talk about patient engagement?What is this mystical, rainbow-adorned unicorn beast that we are trying to buy and sell?  Here are a few things that I think are buried in the term, and I’m also borrowing heavily from this post by Dr. Rob Lamberts, This is what patient engagement really means.

  • Communication: between patients and providers, or patients and caregivers for example. As Dr. Lamberts said in his post:

    “Communication isn’t important to health care, communication is health care. Care is not a static thing, it is the transaction of ideas. The patient tells me what is going on, I listen, I share my thoughts with the patient (and other providers), and the patient uses the result of this transaction for their own benefit.”

    If we can support and improve communication to and from patients, we can therefore help improve the healthcare experience. Improved communication is a more specific goal with clearer outcomes.

  • Education & self-knowledge: this means that patients understand their treatment options, their medication schedules and side effects, their treatment plans, their blood results, etc; but they also are provided with well-formatted, actionable, insightful personal data that they can use to make decisions and behavior changes.
  • Collaboration and partnership: also commonly referred to as ‘shared decision making;’ patients and providers work as a team and collaborate on all aspects of the patient’s care.

What are the outcomes of improving the above? I believe that if we can improve communication, education & insight, and collaboration & partnership we will support patients in being:

  • Empowered: knowledgeable, articulate, able to advocate for themselves
  • Mindful of how their actions impact their health
  • Trusting of their care providers

* * * * *

I challenge all healthcare innovators to do the following:

  • Talk about the impact we want to make in healthcare in clear, specific, and measurable terms
  • Talk with patients, not about patients (for instance, by maintaining a patient advisory  board and collaborating closely with its members)

I hope this is the beginning of a productive conversation; if you have thoughts or perspectives on this that I have not outlined, please add your comment below.

Other e-patients who contributed to this post: Kathy Kastner, Elizabeth Apple, Casey Quinlan,  and Emily Kramer-Golinkoff.

* * * * *

Follow-up reading of interest: 

Patient Engagement – The Problem is that Doctors Aren’t Very Engaging

‘When Doctors Don’t Listen’ – a catalyst for better healthcare by design

Over the past month I’ve been reading a wonderful book called ‘When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests‘ written by Doctors Leana Wen and Joshua Kosowsky. Here’s a partial description of the book from Amazon:

In this examination of the doctor-patient relationship, Drs. Wen and Kosowsky argue that diagnosis, once the cornerstone of medicine, is fast becoming a lost art, with grave consequences. Using real-life stories of cookbook-diagnoses-gone-bad, the doctors illustrate how active patient participation can prevent these mistakes. Wen and Kosowsky offer tangible follow-up questions patients can easily incorporate into every doctor’s visit to avoid counterproductive and even potentially harmful tests.

How relevant and timely a topic, as the topic of healthcare costs (and waste) is reaching a fever pitch; the book is also of particular relevance to me, as I have certainly spent a lot of time struggling to explain my situation to doctors and have felt buried under piles of lab reports, many of them unnecessary duplicates. Overall, I have gotten a lot of useful advice from the book and I plan to send it around to my parents and some of their friends. 

Throughout the book the authors present a series of tips and best practices for patients, so that patients can really maximize their experience with doctors. I’ve been thinking, how could we best use these tips as a jumping off point to design applications and services that empower patients to take control of their health? Below I’ve listed the authors’ ‘8 Pillars to a Better Diagnosis’ …and below each one, I’ve included a list of questions (in the classic ‘how might we’ format that I learned in Future Problem Solving back in middle school, and also of IDEO fame) intended to prompt design ideas that support these pillars.

1. Tell your whole story

What it means: Tell your complete story, from the beginning; make sure to communicate what is most worrisome to you; answer close-ended questions with a narrative; interrupt when interrupted. Telling your whole story provides clinicians with the rich detail and context that they may be missing by asking close-ended, yes-or-no questions. (Side note, I was excited to see the emphasis the authors placed on visual storytelling, given my work using timelines to express my medical history and communicating symptoms on the body.)

  • How might we help patients tools to help them express their story coherently: verbally, visually, aurally, and perhaps in a tactile way?
  • Visual storytelling is a big opportunity because of its efficiency; how might we support visual storytelling?
  • Elements of change or surprise are important to a medical story; how might we help patients communicate change over time or something that surprised them?
  • How might we help patients prioritize their concerns and questions in advance of a doctor visit?
  • How might we support patients in articulating what is bothering them most?
  • How might a medical story be portable, so that patients can take it with them?

2. Assert yourself in the doctor’s thought process

What it means: Ensure that you know why the doctor is doing what they are doing; what they are looking to ‘rule out’ through the use of tests, or what they are ‘working up; ask questions to clarify what the doctor thinks may be going on with you.

  • How might we support patients so that they know the right questions to ask at the right time?
  • How might we help make doctors’ thought process more transparent to patients?
  • Is there a way to enhance the doctor-patient discussion by making the data in the EMR more visual – to make it tell more of a story that is legible to both patients and doctors?

3. Participate in your physical exam

What it means: Undress and expose the part of your body that is troubling you; point out anything unusual or anything you are concerned about; describe your symptoms as specifically as you can during the exam; ask the doctor what they are looking for when they are examining you.

  • How might we help patients make clear what part of their body has been bothering them?
  • How might we support doctors in making their thoughts more clear during the physical examination?
  • How might we help patients better describe their symptoms?

4. Make the differential diagnosis together

What it means: Ask the doctor what she thinks may be going on with you; ask for clarification if anything is unclear.

  • Again, how might we help make doctors’ thought processes more transparent; how might we expose the possible differential diagnoses to patients?

5. Partner for the decision-making process

What it means: Ask questions to understand all of the possible options for moving forward, and the rationale behind those potential avenues; make sure to express your preferences and concerns.

  • What tools or props could help provide the right information at the right time to help patients understand their options and make decisions?
  • How might we help patients speak up at the right time to make their opinions and preferences heard?

6. Apply tests rationally

What it means: As a patient, make sure to ask what any tests are looking for and why they are being performed; understand whether or not tests are necessary; ask what abnormal results really mean.

  • How might we help patients better and more efficiently understand what the planned tests are for?
  • How might we help patients better understand their lab results?
  • How might we help patients decide whether a given test is worth the cost (both financially and potentially with regard to their own health – like being exposed to radiation)

7. Use common sense to confirm the working diagnosis

What it means: Do a gut check to make sure that the working diagnosis is logical, given your symptoms and concerns; ask what else could explain your symptoms how the doctor knows you don’t have those things; do your own research about the diagnosis; make sure the doctor tells you what to expect and what ‘red flags’ to look out for.

  • How might we support patient ‘reality checks’ with regard to their diagnosis; making sure that the diagnosis seems to align with their symptoms and primary concerns?
  • How might we help patients understand what happens next?

8. Integrate diagnosis into the healing process

What it means: After diagnosis, ask for your doctor’s help in understanding what the course of your illness/healing may look like; understand that you always have treatment options, even though your doctor may be guiding you toward just one.

  • How might we ensure that a diagnosis – even a difficult one – is the first step toward healing?
  • How might we help patients understand the course/trajectory that a given illness may take?
  • How might we help patients understand that they have options for treatment?

***

Some of the concepts here I’m hoping to put into practice, and I’ve been doing some work already with a company called Medical Avatar to work toward helping patients visually represent their symptoms on a 3-D body.

Overall this has been a fun exercise, and I hope that these questions may spark some design ideas that could help improve the patient experience and reduce some of the inefficiencies we’re seeing in healthcare today.

On speaking up

I stood in the wings, wearing jeans and my Regina Holliday Walking Gallery jacket, ready to take the stage in front of over 500 people. My heart did three double flips in my chest and I tried to take a few deep breaths. ‘Failure is not an option,’ I repeated in my mind. The speaker in front of me finished, and I stepped out and grabbed the microphone from her hand. I held it up to my mouth and started to try to tell a dumb joke, and then realized the crowd was still clapping and cheering so no one could hear me. They stopped. I paused. I looked back at the screen, and my mind went completely blank.

‘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.

mist

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.

box1

box2

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.

web1

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.

web3

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.

web4

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.

update: here is the video:

Eyeo2013 Ignite #4 – Katie McCurdy from Eyeo Festival on Vimeo.

Mapping symptom relationships and clusters

I was just working on a basic diagram of my symptoms for an ignite talk I’m giving in a few weeks at the eyeo festival, a data visualization conference held in Minneapolis. I wanted the diagram to communicate how I felt when I was going to see a new doctor for the first time: overwhelmed by the ‘constellation’ of various symptoms, confused, and unsure where to begin. I wanted all of the symptoms to feel kind of random and disassociated, but with ‘Bad guts’ and ‘Weakness’ jumping out as the most significant. Here’s the diagram that I had come up with:

symptom_digram

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:

symptom_digram_2_clusters

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.

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.