MedX @ The White House: what a time!


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.


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.”


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.


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:


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.
  • 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:


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








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!

Picturing my health with a Vibrance Map


Mini-Vibrance Map

Every time I sit down with my doctor, the first thing he does is ask me how I’m doing. He listens intently as I tell him about the things in my life that I think he might find significant – changes in symptoms, medications; you know, medical stuff. He always says ‘what else?’ and waits patiently until I’m done with my verbal report.

He is by far the best neurologist I’ve had, and he knows my medical self very well. But I think he has very little idea of what my non-medical self is really like. When I enter his office I am acutely aware of our limited time, so I don’t embellish my story with many extraneous facts about work, travel, recreation, friends, or family. I want to use our time wisely, and I don’t want to annoy him. Thus I present my medical self to him, a collection of physical sensations and historical medical events, supplements and bloodwork, surgery and tests. It works pretty well, and we have a good bond, but it feels like something is missing. I’m much more than my medical self, and my health depends on much more than medical interventions.

Recently I’ve been trying to think in a little more holistic way about my health, as I’ve noticed that things like ‘having satisfying work’ and ‘getting outdoors more often’ have seemed to help me physically feel better. I’ve been wanting to map out some of the lifestyle factors that seem to make me feel better, so I’ve started with this diagram of some of the people and things that support me and contribute to my life balance; if any areas are deficient, my mental and physical health will likewise become deficient.


Full-size vibrance map

It’s an incomplete list of people and things that make me happy and joyful, that make me feel alive and vibrant, and that are my daily support. It would be great if I could share an at-a-glance view of my vibrance map, so that my doctors could quickly see if I was deficient in any important way.

How could such a map be created? My phone knows where I’ve been, who I’ve been spending time with, and it contains photo evidence of many parts of my life. My phone’s apps even know the identity of many of the people featured in the photos. It’s not a huge leap to think that we’ll soon be able to automatically generate a diagram to express how we’re doing with any certain facet of our lives.

Regarding oversharing: I consider my care team my confidants and partners, and I would actually enjoy giving them this quick view into what my non-medical-self is really like. ‘Quick view’ being the key phrase, as I’d never want to burden them with too much information.

This is certainly inspired in part by Lana Voynova‘s exploration into her instagram photos as they relate to her state of health. I’m curious what other visual health representations you’ve come across and would love to hear!

Recruiting patients for healthcare design research: why and how to do it

Recruiting people for design research can be a beast. Anyone will tell you. It’s always a challenge to make sure you’re getting people in the right demographic, with the right level of technological comfort, who have the specific behavior or mindset you’re searching for – and who happen to be available during the time you’re hoping to meet with them. Lately I’ve been hearing some folks at healthcare start-ups say they don’t speak with patients or include them during their design process – because they don’t know how or where to find patients.

I’d like to break this down. If you’re involved in creating any product for which patients are a stakeholder, here’s 1) why you need to include patients in your process, 2) what you risk by not including patients, 3) some creative ways to recruit patients, and 4) an important public service announcement about paying patients for their time.


Why you need to include patients in your process

As a ‘User Experience Designer,’ it’s my job to make sure I have a full understanding of my end users and their context. That’s true for any designer, anywhere – from the industrial designer creating bic pens (can you imagine? who is this person?) to the fashion designer creating a sassy pant suit, to someone creating a mobile app for diabetics. We designers need a good understanding of our users before we start designing, and we need to get continuous feedback throughout the design process to make sure the design direction meets users’ expectations and solves real problems. It’s part of our process; it’s how we make things that people like and want to use. My research most often involves interviewing people, observing them in their environment, and creating product prototypes for them to interact with and react to.

I’ve worked pretty much exclusively in healthcare for the past couple of years, and I have found researching with and designing for patients an especially rewarding and emotional experience. Patients are always up-ending my assumptions about how they manage their condition, what their days are like, and how they’re feeling. Their stories are often private, sometimes painful, and sometimes hard to hear. I feel honored with their stories and perspective. While I always find ways to communicate design findings to my team, I also carry their words and emotions inside me, in my heart, throughout the course of the project and even into subsequent work.


Without fail, the insights that we gain from patient research have prompted my teams to make vital changes – to the core product concept, to language and terminology, or to the look and feel of the product.


What you risk by not including patients

If you intend for patients to use your product in ANY way, you need to include them in your design process. If your intended user will interact with patients during the course of using your product (think provider or office staff), you need to include patients in your design process. If you do not have a full understanding of your patient users or stakeholders, you risk building the wrong product, putting emphasis on the wrong features, and generally creating a sub-par product that no one will want to use.

Question: What if I don’t have time or money to include patients in my product development process?

Answer: if you have time and budget to create your product, you surely have time to make sure you’re building the right thing. Researching with users can be a ‘fast and light’ process – it can be as lightweight or in-depth as you want to make it.

Question: What if patients are my intended end users, but they aren’t my target ‘client’ or aren’t otherwise paying for my product? Why should I spend the energy to understand their perspective?

Answer: If you sell a product intended for patients, and patients don’t want to use it because it isn’t well-designed for them, your client won’t like you and they’ll find someone with a better product. A shame spiral will ensue. You will end up living in a van…down by the river.


If you don’t include patients in the design of your healthcare product, you will end up living in a van down by the river


Some creative ways to recruit patients

Now that we are on the same page about the importance of involving patients in design, let’s talk about how you can find them. Before you start looking, though, you’ll want to make sure you know which kinds of patients you need to talk with; outline the characteristics you’re looking for, and create a screener (i.e., a list of questions that you can ask prospective participants to make sure you’re getting the right breakdown of folks.) That said, here are some ideas for finding patients:

1. Post flyers at healthcare clinics and institutions


I have done this with some surprising success. I created flyers last year for a research project I was doing; I was looking for Android users with diabetes who were willing to speak with me for 30 minutes in exchange for a gift card. I distributed the flyers at a diabetes clinic, after calling and getting support from a nurse who worked there; over the next few months, I got at least 12 responses from it. You will always need to get permission before putting up these kinds of flyers, or else they’ll be taken right down. Big hospitals usually have lots of rules about this kind of thing. Smaller clinics might be easier. I gained an especially awesome ally through flyering: I connected with a person who I call the ‘Don’ of the local diabetes mafia – a very productive contact who passed my name along to her underground diabetes community and got me a number of interview subjects. See also, ‘influencers,’ point #2.

2. Find the ‘influencers’


This one is exciting. If you can connect with a key patient leader, one that the rest of the community looks up to, a whole world of patients can be opened up to you. This happened with me and the diabetes mafia – once I met the Don of the mafia, I was flush with participants for my project. It was amazing. Places to find influencers: twitter, patient blogs, patient communities. Look for patients who are speaking out openly about their condition, perhaps at conferences or events. Get creative and find them however you can.

3. Show up at support groups

support group

This sounds a little creepy, but when handled with finesse and discretion this can be a good way to get potential participants. If you decide to try reaching out to people via a support group, I recommend that you contact the support group leader as your first step. Explain what you are doing and who you are working with, tell them that you are trying to help create a better healthcare experience for patients who have [x condition], explain that you are paying patients for their time, and ask if it is ok if you come to the beginning of a meeting to give a quick overview and pass out flyers. They may say yes – if so, that is great. If they say no, ask if they would be willing to circulate your flyer among group members.

If and when you go: show up a little early and try to chat 1-on-1 with a few people before the start of the session. Prepare some small cards or hand-outs about your project. Give your spiel. Make clear that you are not a patient (of course, unless you are,) and then graciously leave before things get awkward.

4. Connect with online patient communities, including twitter

patient community

There are multiple online communities for almost any condition you could possibly think of. These communities themselves can be a wonderful mine of patient opinions, emotions, fears, needs, goals, etc. Assuming you want to talk to actual people and ask them questions, here are a few tips. First, try reaching out to the community leader before joining any private disease community. You don’t want to be a weird lurker and you don’t want to misrepresent yourself as a patient when you actually aren’t (unless, of course, you are – in which case, go wild.) Ask if you or they could start a discussion thread about the opportunity to speak with you. This is especially helpful if you’re up for doing remote research with people – like over skype or google hangouts, or even phone.

You’ll also find a hearty discussion on twitter for most conditions. Find out what hashtag the condition is using, and tweet out your opportunity using that hash tag. In this case, it’d be good to create a basic webpage with information about your study and either a form for interested folks to fill out or a phone number for them to call. This strategy can be good for remote research, but maybe not so good if you need people in your immediate geographic area.

5. Reach out to ‘friends and family’


Depending on how specific your recruiting is, your social network may be a great place to pick up a few additional participants. Send an e-mail to everyone you know who might be a good lead or who may be able to connect you to others. If just one of your people forwards the email to a few friends, you might gain a few participants right there. Be careful about always relying on the friends and family connections – you don’t want to be using the same little pool of people for all of your research projects.


An important public service announcement about paying patients for their time

 cash money

Pay patients for their time. It is absolutely standard practice to pay any user research participants for their time. Patients are no different. If you are getting paid for your project, you owe it to patients to pay them for their time; they are helping you create a better product, get better insights, and basically create better value for your client or company. They have a lot of medical expenses. Their time is money, just like yours. Pay them! Pay them at a competitive rate!

(If you are working on a passion project and are not getting paid by anyone, that might be a different story. But if there is a stream of cash involved, funnel some of that cash to patients.)


There’s so much more to talk about, but these are at least a few ideas to get you started. Please post any other thoughts you have or strategies for recruiting patients – I’d love to hear ’em.

Ski for MG: Stowe Derby 2014


Yesterday I skied a 20k race called the ‘Stowe Derby’ – a cross-country ski race that starts at the top of Vermont’s tallest peak, snakes down a ‘green circle’ (easy) ski run, passes through a nordic ski center, and finishes on a bike path down in the town of Stowe. It was my first year doing the race, and I decided to raise money through my participation for my autoimmune disease, Myasthenia Gravis. I was very inspired by a number of MG patients I met at last year’s annual conference; many of them have raised money for our disease, mostly through organized events called ‘MG walks.’ MG walks are thusly named because many Myasthenics have a hard time walking for long periods; so walking for a cure is a symbolic way for people to support the cause. I’m fortunate not to have any problems walking, so I decided to use this race as an excuse to raise money while pushing my limits a bit (this was my first XC race ever, and by far the longest distance I’ve ever skied.)

Here is my pre-race interview:

Then I got on the chairlift in my skinny skis:

It was a warm day, and the sun beat down on the motley group of skiers gathered at the top of Stowe mountain – many appeared to be experts and were clad in sleek, stretchy race suits. Another man had a rubber horse head mask on along with jeans, and yet another had some sort of glittery knickers (American usage of the word.) They started us in groups of 5, so that pile-up crashes around the turns would be minimized.

Once they set us free, I flew down the winding ski run on my skinny cross-country skis, tucking along all of the straightaways, gathering speed and passing a few people and getting passed. I stood up and slid around each turn, wobbling here and there but never falling. I waved, smiled and hooted ‘woo’ at the spectators who were gathered around the most harrowing curves to watch the inevitable sloppy falls. I didn’t give them what they wanted – in a race known for its extravagant spills, somehow I kept myself on my two skis for the entire race (thanks, Dad, for starting me skiing early!) I felt in my element, exhilarated, and refreshed.

After saying hello to my husband and friend Laura at the bottom of the downhill ski area, I headed into the Stowe nordic center trails.  The trails were rolling, with some fun short downhills and a few absolutely brutal uphills. I wheezed and pushed through this section of the race, and came to one last, long, tunnel-like downhill in the woods. I was skiing behind 4 or 5 people. Suddenly, almost all at once, they all shot off the trail and fell into the soft snow on the left and right. I’m not sure what happened, or if this was some kind of flash mob, but I made it past them.

Soon after I saw Nick and Laura again for a water-up, as I moved into the long, flat section of the race:

On the flats, I spent almost the entire time alone. I got into a steady routine and finally had some time to think. I coasted past old barns, a half-frozen river, soft white snowy fields. I felt the air fill my lungs, and I thought of my friends who have MG breathing crises and have to be hospitalized. There’s a lot of dysfunction in my body, but yesterday I celebrated everything that is still so amazingly functional. My nerves and muscles worked in sync to propel me forward. My inflamed joints stayed quiet, at least for awhile. My guts had been angry earlier in the day, but they cooperated during the race. I dedicated body parts to my MG and e-patient friends – my joints to Britt, Alan, Emily…my toes to Jess…my lungs to Laura…my heart and blood vessels to Sarah…my two working legs to Joe…my muscular strength to my MG brethren who couldn’t have participated in this race. My eyes were strong – no double vision, no droopiness. I silently thanked my neurologist and herbalist who helped me get to this point.

I appreciated this time to focus my thoughts and energy for a few minutes on the patients (MG and otherwise) who have inspired me over the past two years. It made crossing the finish line feel like more of a meaningful accomplishment.

Photo Feb 23, 13 57 36

My biggest thanks go to my husband Nick and friend Laura, who supported me today, and to all of the very generous people who donated to my race and are enabling me to give over $1600 to the Myasthenia Gravis Foundation of America. I’m so proud to be able to give a substantial amount of money to a cause that can have a direct, positive impact on patients like me, and I’ve been overwhelmed with the outpouring of support from my friends and family. What a great day.