MedX @ The White House: what a time!

EEOB

Some participants walking the halls of the beautiful Eisenhower Executive Office Building, the EEOB (photo courtesy of Medicine X)

Last week was an adventure in our nation’s capitol. I had the pleasure of helping plan and co-facilitate a joint Medicine X and White House event called ‘Engaging Participants as Partners in Research.’ The purpose was to pull together diverse stakeholders in the research ecosystem to identify the most pressing problems and promising opportunities, and brainstorm and prototype solutions.

The night before the event, we had a dinner to celebrate the birthday of Dr. Larry Chu, the Executive Director of Medicine X. Here is a hilarious photo of a few people waiting to jump out and surprise him:

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The next day, we all gathered in the EEOB and kicked off the meeting. What a room. If you look closely in the back you can see the white house logo in the little doorway.

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Dr. Chu speaking to the group. 

It made me so happy to see all these people, the ones who really ‘get it.’ That is one of the energy boosts of being at these events. You know you are on the same page with these people, and over time we’ve become friends, and not only on social media. Medx – it really is a family.

whitehouse

I know the people in this photo from many different phases of my life. Claudia Williams, the main organizer for this event, is holding the mic. (photo courtesy of Medicine X)

But what was wonderful about this research meeting was that it included lots of newbies, people who may not have been as accustomed to participating in meetings alongside patients, on their feet, in a room strewn with chairs and sticky notes and markers. As one high-profile speaker said:

“Look at this room. This is a room where treaties are negotiated, and now it’s covered in sticky notes. This is the way it should be.”

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Photo courtesy of Medicine X

I got to rub elbows, literally, with DJ Patil, Chief Data Scientist of the USA, and we got to hear from both him and the CTO, Megan Smith. I had a sense of awe at these people who are so articulate and mission-driven, and who navigate this beastly hot and sweaty city all summer long, in suits no less, to get as much done as they can before the end of their term. There was definitely a sense of urgency, as this presidency is nearing its close.

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Here’s me, reading out some themes from our group. See, I did ‘speak at the White House’ just like my parents hoped. Photo courtesy of Medicine X

The whole day was a bit chaotic, and we were trying to accomplish a lot in a short time, but I think everyone got a lot out of it. At the end of the day Claudia led a powerful group exercise with the whole room, in which she asked people to state what they ‘need’ or could ‘offer.’ One woman offered her skill at interpreting HIPAA laws. Patients offered their expertise and perspective. Researchers called out for participants. It was an emotional way to cap the day.

A few of my takeaways:

  • A small thing researchers can do is send a thank you note to the participants, after the study. That was an ‘aha’ moment in one of the presentations.
  • Even better, make sure participants know what the results of the study were. Close the loop with them.
  • Find ways to pull patients into the research planning process, so that we’re studying things that people actually care about, and setting up our protocols in the most patient-oriented ways possible.

Overall I was honored to take part; I was happy to see old friends and make some new ones, and I felt lucky to wander around the EEOB…

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And get a last-minute tour of the West Wing…

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And I love Zoe Chu:

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Living #MedX

For the first time in many years I will not be attending the Medicine X conference at Stanford. I will miss the people, the inspiration, and the sunshine of course, and I’ll certainly be following along closely from my remote perch in Burlington, VT.  Though I’ll be watching from afar this year, likely with a distinct feeling of FOMO, I’ll take some comfort in knowing I’m doing my best to live the MedX dream. Let me explain.

To me, Medicine X is more than an event; it’s a lifestyle. Medicine X and the organizations and people who comprise it have a few things in common; they’re patient-centered, they have a problem-solving approach, and they’re inclusive, collaborative, and participatory. These principles are ingrained in my own approach to my healthcare, my work as a healthcare experience designer, and my side projects and volunteer work.  My involvement with the people of MedX gives me strength, courage and confidence to speak up for what I know is right.

What does it look like for me to live #medx as a patient, designer, advocate, and organizer? (Obviously this will be different for everyone.)

  • Work collaboratively with doctors
    I always treat all doctor visits as collaborator meetings; I come prepared with an agenda and hopefully some visual aides.
  • Facilitate connections between people and ideas
    I co-organize a healthcare innovation meet-up group in Burlington, VT that is open to anyone (doctors, patients, entrepreneurs, academics, designers, alternative practitioners, etc.) and has almost 400 members. Medicine X is all about the intersection of people and ideas, and our meetup group has been very successful at this.
  • Bring patient voices into healthcare events
    This year I have done a little work helping organize a healthcare technology conference, the VITL Summit, which will be held in a few weeks in Burlington. I helped advocate for patients to be included on panels and to give ignite-style talks during sessions, like at MedX. We are nowhere near the #medx philosophy of ‘patients-included’ (or even ‘patients first’) but it is an awesome start!
  • Help patient communities connect and learn from each other
    Part of my decision not to attend the conference this year was because the first ever ‘MG Walk‘ will be held in Vermont on the same weekend. MG stands for Myasthenia Gravis, the rare autoimmune/neuromuscular disease that I have had since I was 13. The walk is a chance for me to raise money for a cure for my condition and finally meet more local folks in the northeast who have MG. Along with another patient, I am also planning a regular in-person support group in our area.
  • Design better solutions for healthcare problems
    As a designer and patient working in the healthcare field, I am in a unique and privileged position of being able to both intimately feel the pain of our current system, and to be able to actually do something about [some of] the problems I see.  One of the most exciting things that has happened recently has been the chance to work as a UX Strategy Consultant with the University of Vermont (UVM) Medical Center, an academic medical center right here in Burlington. And actually just a few blocks from my house. Since I began this work about two months ago, I’ve had the chance to meet with and observe patients, caregivers, doctors, nurses, billing representatives, and more. I experienced the euphoria of going through research and design cycles around topics that mean so much to me, and I’ve done more interviewing and observation in the past two months than I’ve done in the past year. Our projects have already made some great progress, and I’ve seen how small improvements can make a huge impact both to the experiences of medical staff and patients. My teams couldn’t have made such quick progress without the support, advocacy, and open minds of the folks at UVM – they did not know that they were also living #medx. In this role, I find myself naturally talking about and advocating for topics that mean a lot to me – open access to health information, OpenNotes, etc. Sometimes I feel a little bit like an embedded spy, or a mole or something.
  • Help other patients express themselves visually
    For a long time it’s been a side passion of mine to help other patients express themselves and communicate better using visual means. Just recently I’ve started volunteering up on the Adult inpatient unit at the hospital with a program called Art from the Heart, which offers art activities to inpatients.  I’m just starting out, but I’ve already seen how art can bring joy, calmness, and that feeling of ‘flow’ to patients.  Beyond this, I’ve continued to work on visual experiments for communicating my health to my doctors, and I’ve been putting together a PDF template for people to print out and draw symptoms and health information on. I’ll be finding a home for it on my website shortly.
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  • Help patients tell their stories
    As part of the Prescribe Design series, I’m helping to organize a group of amazing patient-designers and makers to tell stories about their experiences creating solutions for their own healthcare problems. It’s called ‘Patients who Design,’ and it’ll be coming out in a few weeks.

It can be a challenge to balance these fun projects and give them all the attention they deserve, but it has been a true joy to collaborate and connect with amazing and talented people on all of them. I am lucky to have such satisfying and personally meaningful work, and to find it locally.

The point of all of this: although I need to miss #medx this year, it is always living inside of me.

My Info Vis Commentary – ‘Visual storytelling in healthcare: Why we should help patients visualize their health’

I was honored to be asked to submit a commentary to the Info Vis journal, based on the original ‘health history timeline’ posts that I’d written on this blog:

After years of dabbling and being interested in data and information visualization, it was very exciting to be able to contribute to this academic journal. I decided to position the article as an appeal to ‘info viz’ types to help patients better understand and communicate about their health, and I added some additional content based on some new experiments I’ve been doing with using paper worksheets to express my symptoms.

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The commentary is published online in PDF format here. Check it out, and tell me what you think in the comments!

On my personal mission statement, love of creating order from chaos, and other ramblings

Last year, around this time, I sat myself down and wrote a somewhat robust post about my ‘year in healthcare experience design.’ Partly because I felt like I hadn’t accomplished enough, so I wanted to lay it all out to better understand what I’d been doing. Perhaps it came off as humble bragging.

In this fresh, crisp, new year I’d like to do something a little different. I want to ponder my personal mission, what I learned about myself in the past year, and the things that excite me about my work.

I recently had the opportunity to develop a personal mission statement. It felt good. It felt like a rudder, or a guide post, or a cairn, or a skeleton upon which to build out the ‘flesh and organs and skin’ of my work. Here it is.

***

My mission is to:

Help patients tell their stories

and help providers focus on the work they love

through thoughtful UX design

& research and close collaboration with fun, talented people.

***

See how it looks like a haiku? Maybe that’s why I like it. I would like to break it down, because I’m like that.

***

Help patients tell their stories

The first line, about helping patients tell their stories, is embedded deep inside my core at this point. Since I have gotten involved in the e-patient movement as a speaker and advocate, and since I’ve gotten involved in healthcare UX, I have not seen a lot of progress in tools and technology (digital or otherwise) that help patients tell better stories. I’m convinced it’s one of the best ways patients can take ownership of their healthcare; I think visual storytelling holds great promise; and I’d like to be a part of these solutions.

To this end, I’m doing 3 things. I’m working with the non-profit Open mHealth on a platform called Linq that helps patients tell their ‘data story’ to their doctors and collaborate with their doctors around health tracking. I’m also reviving a slumbering project/product that I’ve called Pictal; Pictal is a way for patients to create a visual timeline about their health so that they can communicate better and more efficiently with their care team. Finally, I’m helping a Vermont health technology organization, VITL, plan their Annual Summit; I’m proud to have the opportunity to bring a patient voice into the conference planning and to advocate for patient involvement (and storytelling) in the conference.

***

Help providers focus on the work they love

Working in healthcare as a UX designer, my job is to build empathy with the people for whom I’m creating products and solutions. I also love my doctors. So it’s not hard for me to empathize and care for the doctors and care providers who are working within a sickeningly complex and stressful system to deliver care to patients like me. The Linq project keeps me close to the provider perspective.

***

Thoughtful UX Design & Research

This line, I have to admit, might need some wordsmithing. Basically I am always striving to be a research-driven designer, to follow a user-centered design process, to be deliberate and be good at planning my work. I want to bring the user’s voice into the work I do.

***

Close collaboration with fun, talented people

Ooh I have this one nailed down. I recently took on part-time work with my good friends’ start-up, Notabli, as a UX design lead. Notabli is not healthcare work – it’s a platform for parents to archive and securely share their kids’ childhood moments. No matter, these people are fun. We have pranks and in-jokes (would you just look at it!) They’re also wildly talented and smart. Great combo.

I also love my fun and talented team at Open mHealth, of course, but this year I learned something really important about myself – I get my energy from having people around me. Just ask the spectators at my work holiday party who witnessed me pull a hamstring by attempting the splits in cowboy boots (and a dress) – just boisterously showing off. This looks about right – a blurry action photo from just before the injury:

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Put me in a giant room of people, and I want to learn about each one. I also get high from ‘team flow’ – getting lost in a complex task with a work partner or a team.

Thus, I’ve decided to curtail my remote work a bit for the time being; though I remain ever excited about my work with Open mHealth, I’m supplementing it with a healthy dose of in-person collaboration with Notabli.

…but there’s something else, something new, something slightly OCD

All of the above is good. I’m happy with it. But here is something else that’s making me feel high right now – let me try to explain.

I like to create order out of chaos. When I was younger I loved mowing the lawn and making the neat lines. I love sweeping the floor, putting things away in their place, and erasing chalkboards. Maybe it’s a slight sickness, but it’s also a super power.

I’m currently creating pretty big-time order out of 2 forms of chaos, and I think I have a chemical high from it. The first is with Notabli, where I am helping the team implement an awesome product development process. We’re working on how information flows between people and systems; how to communicate better with our developer partners, and how to be more transparent about what we are working on. I’m making hella diagrams and writing hella Trello cards. It’s so satisfying. Creating any product is a complex system of people and tasks and ideas, and helping optimize that system is such a wonderful challenge. (And doing it with such fun people is quite a bonus.)

Simultaneously, in the past few weeks I’ve suddenly jumped into a bit of a product manager role at Open mHealth; this has involved scouring through our existing Linq user stories and tasks, looking at them with a new lens, also writing hella Trello, and really doing a big sweep and reorganization. This work scratches my minor OCD itch.

So, to summarize: I’m happy to be ‘on-mission’ with my work and lifestyle; I’m happy to be developing as a design team leader and product manager; I love people; and I am chemically addicted to creating order out of chaos.

Illustrating symptoms & their contexts

I’m taking an illustration night class right now at a local art center, and my goal was to spend some time using pictures to try to sort through and explain some new physical sensations I’ve been having over the past few months (actually, years.) I seem to have become very sensitive to certain smells and allergens, and it’s taken me a few years and a fair amount of self-tracking to understand that these smells/allergens are associated with this spacy/numb/can’t think feeling that I get sometimes.

What’s hard about all of this is that it’s invisible. I’ve had a hard time explaining to my husband, my co-workers, doctors, and friends what I’m feeling; I get the feeling that my story doesn’t always seem very believable. I wanted to write down some of these sensations to better communicate to them and any future doctors exactly what I’m feeling. Thus, a kind of rough draft of my attempt to illustrate this series of symptoms/feelings and, importantly, the contexts in which they occur:

01_tingly legs

02_relief

03_room

04_willy

05_floors

06_face

07_away

08_alone

Now what I haven’t gotten to is a nice illustration of how I feel so supported and loved by my husband, co-workers, and friends – that’s a huge piece of my story! I just haven’t figured out how to envision that yet.

As with any exercise of making the invisible visible, I did notice a new pattern emerge: the theme of ‘wood.’ I noticed I was drawing wood and talking about wood quite a bit. I suppose wood tends to get mildewy, and when it’s refinished that requires kind of harsh chemicals. So. This is reinforcing my desire to move to the high desert and live in a stone and ceramic household – and also wear organic, white, flowing cotton clothing. Oh yes, there is a desert hippie within.

Please share your thoughts about illustrating symptoms and their contexts – how could we help other patients do this? How does it help? What are the drawbacks?

Visualizing my daily self-management

What does my daily medication and self-management look like? How could I visualize this regimen? How can I communicate the ‘burden’ and work of caring for myself?

Those were my questions as I prepared to help facilitate a behavior design workshop at the Stanford Medicine X conference a few weeks ago. The day-long workshop was taught by Kyra Bobinet and conference organizer Larry Chu, and my role as a patient facilitator (along with co-patient-facilitator Dana Lewis) was to help bring the patient voice into the workshop and help attendees understand the context and complexity of patients’ days.

I decided to draw pictures of the things that I need to do on a daily basis; that way I could show the workshop attendees what my day was like instead of just telling them. Here’s the resulting ‘day’ that I presented during the workshop:

Morning meds, ~7 minutes:
On waking up, count out 16 pills (medications and supplements) from 9 different containers. Walk to the kitchen and squeeze 6 drops into my mouth. Heat up water, then measure out, stir up and drink my matcha tea (which has helped reduce inflammation.)

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Mid-day meds, ~1 minute:

Remember to take my mid-day pills to help with weakness. Grab my container from my purse, shake 2 out, pop ’em down (with or without water.)

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4pm meds, ~1 minute:
Notice a reminder in my e-mail inbox to take my 4pm meds. Shake out 6 yellow supplements from one container; 2 pills from another container. Gobble down with a gulp of something cold.

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Nightly spreadsheet from hell, ~5 minutes:
Notice a reminder in my e-mail inbox to track my symptoms and a few behaviors for the day in my giant ‘spreadsheet from hell.’ I use this to keep track of what’s going on with me on a daily basis, because I tend to forget from day to day how I feel (curse of the eternal optimist.) (Note – a drawing of a spreadsheet from hell actually looks kind of cute. An actual spreadsheet from hell makes your eyeballs bleed.)

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Bedtime meds, ~5 minutes:
Count out 15 different medications and supplements from 7 containers. Gulp down all but 4 of them – put those 4 under my tongue and let ’em dissolve.

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***

What did I learn through this exercise?

1. I could better see and understand my regimen and the impact it has on my day

I estimated that I have 19 minutes of medication dosing and self-tracking work each day, split up over 5 discrete moments on average. It was helpful to view my pills in color like this, instead of looking at the bottles – because that’s really what I see right before I swallow them. This type of drawing (or more likely, a color photo) would be a great help for a caregiver trying to help count out meds.

I’ve never documented my daily process like this before, so I never quantified the time it took out of my day or considered the way it might interfere with my daily activities. In the workshop, I stressed the point that most patients have daily, repetitive activities that they must keep up with and that drain their willpower and attention reserves. Asking a patient to add another behavior or activity to their daily regimen is asking a lot – especially for someone whose day is already fractured into tiny pieces.

2. I don’t have it so bad.

Sure, it was clear that my daily regimen divides my attention. But as my fellow patient facilitator Dana spoke about the hour-by-hour, minute-by-minute management and decision-making that a person with diabetes has to keep up with (something like 400 decisions per day,) I realized that my self-care regimen is a cake walk compared to hers. I can go on autopilot for a lot of it, which helps me save some brainpower for the important things (but which means I do make mistakes sometimes, so….)

3. It’s time to grow up and get a pill organizer

Today I ordered a pill container so that I can count out my am/pm meds on a weekly basis – I’m hoping this will help me reduce my own pill dispensing error. I can’t believe it took me 23 years to consider this, but pill organizers always seemed like they were ‘for old people’ (especially when I was 13 and newly diagnosed) and so I didn’t consider them before.

4. I left a lot out

After the workshop, I realized that there are a lot of things I do on a daily basis to care for myself that I didn’t include in this visual. Things like avoiding dairy and gluten (which definitely takes work,) exercising, getting enough sleep, taking baths to help me fall asleep and relax, and other such activities that many would put into more of a ‘lifestyle’ category. It’d be interesting to layer these into my day and see how that looks.

***

I’m always excited to test out new ways of visualizing my health situation, and I almost always get one or more useful nuggets of insight out of it. I’d recommend to anyone with a chronic condition that you spend a day or two documenting the activities that you do as a part of managing your day-to-day care; you might discover some opportunities for optimizing, as I did. I’d love to hear about it!