I testified.

Last week, I had the opportunity to testify before the Green Mountain Care Board, a Vermont state institution tasked with ‘ensuring that changes in the health system improve quality while stabilizing costs.’ I spoke briefly about a proposed policy change that would make it simpler for patients to give consent to all of their care providers who want to access their electronic health record via the VT state health information exchange (VHIE). I wrote down my comments and submitted them, and I thought I’d include them here (embellished a little bit after the fact):

2/13/14 Green Mountain Care Board comments – Consent Policy change

I’m Katie McCurdy. I’m a patient and user experience designer, and I live in Burlington. I’m speaking today both as a chronic patient and as a designer who spends a fair amount of time studying systems and human behavior. I’m speaking in favor of the global consent policy change.

As a patient, I have experienced negative consequences when information was not immediately available to my providers at the time when they need it.

Example 1: A few years ago I was in a position of seeing multiple providers – a number of specialists and a primary care doctor – in an attempt to get a diagnosis. These providers all used different EMR systems. I ended up having the same exact same bloodwork done multiple times, in multiple locations, within a very short time period.

Example 2: When I moved to a new city, I had to have new diagnostic testing done because the previous results weren’t readily available. I had to pay more money and had to have a somewhat upsetting test re-performed, because it was easier to re-do the test rather than jump through the hoops to get my records sent.

Example 3: I traveled last year to see a few specialists. In order to try to minimize duplicate testing, I carried around all of my results in this heavy binder. I was *the* expert in my health history, Johnny on the spot with my results. But that burden was on me. And I am a very atypical patient – most patients do not carry around huge binders of their records, and they shouldn’t have to.

What I have experienced is similar to what many other patients have experienced: when there exists friction in a system making it at all difficult to access prior records or records from other systems, providers are going to do the most efficient thing – which is often to simply reorder the test or procedure instead of jumping through hoops to obtain it. This results in waste and contributes to the high cost of healthcare. By removing much of this friction through this consent policy change, we simplify the experience for patients and give providers access to the information they need, when they need it.

If I’m going to see a new doctor in Vermont, and I make an appointment with that doctor, I don’t want to fill in 37 intake forms. I don’t want to have to provide individual consent forms for each provider I see in VT. I don’t do that at Fletcher Allen – when I make a new appointment with doctor in that system, they can automatically see my history. That’s the magic and promise of health information exchanges; that information can flow freely through the system and that it is conveniently, immediately available to care providers.

As a designer looking at this from a product standpoint: I know that most people don’t want to have to heavily customize a product. They just don’t have time. People like things that ‘work’ out of the box. We have the opportunity here to offer a system that ‘just works’ and that is simple and efficient for patients.

Finally, I did have comments about the suggestion from the ACLU that care providers should have to ‘click a checkbox’ every time they access a patient record. As a designer who works on websites and apps, many of these containing highly sensitive and personal health information, I understand the underlying need to ensure that those who access the records are doing so deliberately and only in the course of caring for a patient. However, there are some usability and behavioral reasons why an additional checkbox is not an ideal solution:

  • It adds a repetitive step that providers will take over and over throughout each day; this repetition will quickly lose any meaning, negating the very reason for including it in the first place
  • Adding another ‘click’ means adding time to access the record (and increasing the possibility for errors if they submit without the checkbox clicked) – time that providers don’t have to spare

I suggest that the board and VITL take into account the underlying concern of the ACLU – that care providers will access a patient record in error or malevolently – and find alternative ways to help mitigate these concerns that do not add time or effort to the process of accessing patient information. Some ideas:

  • Incorporate language into the sign-on screen that reminds providers about privacy concerns
  • Make buttons or other calls-to-action more descriptive – instead of the ‘Continue’ button that many people mentioned in the board meeting, make the button say ‘I have consent to view this record’ (well maybe something more brief, but you get the idea.) The language could surround the button as well.
  • Find other key moments to incorporate this language, as needed.
  • Incorporate a function into the VHIE for providers who accidentally access a patient record – so they can say ‘I accessed this record by mistake’ and that fact is logged,instead of the system having to guess whether an accidental access occurred or not.
  • I believe VITL is already thinking in this direction, but I believe the best possible security mechanism for this system would be to provide patients with proactive notifications of who is accessing their record. If they believe a person or institution is accessing it in error or with harmful intentions, the patient can flag that and take action. Let patients help with this difficult problem, and give them some transparency and ownership in the process.

 

Hut life, patients included

photo (13)

We made our way along a snowy trail in the woods of New Hampshire, a small train of 6 backpack-toting, sled-pulling women (and one man). The area was still recovering from an ice storm, so beneath the inch or so of snow was a thin layer of glare ice, which we navigated and slid along until we reached the ’66 Dartmouth cabin. The log cabin was more like a lodge; what I imagine an old logging camp in Northern Michigan (from where I hail) would have been like. It had a giant main room with a wood stove and fireplace; multiple sleeping lofts piled with those humorous vinyl-coated camp mattresses; gas lanterns and moose paddles hanging throughout. It was rustic and charming.
My companions were a group of mostly strangers, members of the Outdoor Mindset community in the Hanover, NH area. Outdoor Mindset’s goal is to help patients with neurological conditions spend time in the outdoors, doing activities they love. My old friend Jeanie had invited me to the outing; we’d been co-captains of our college ski team back in the 90’s, and Jeanie’s now in med school at Dartmouth. Her husband, Jake, is a co-founder of Outdoor Mindset.

Most of the people on the outing were patients with various neurological conditions like MS and epilepsy, and one woman had multiple autoimmune issues (like I do, but hers were different from mine.) I don’t think they knew I was a patient at first, as I was kind of a random and unexpected addition to the trip, so my pointed questions about their symptoms and diseases might have been a little off-putting at first. But as we walked through the woods, first on our way to the cabin and then from the cabin to the top of a small mountain lookout nearby, we spent a lot of time talking and getting to know each other. I found that many of us had symptoms in common – even if our diseases were different. A lot of us talked about neuropathy – tingling and numbness in our extremities. The conversation swung seamlessly between health talk and outdoors talk; from the cost of healthcare to a hiking trip at Kilimanjaro; from treatment options to a climbing trip or a trek through the Indian Himalayas.

Now these are my kind of people! Maybe just a ‘little tiny bit’ noncompliant patients who don’t always accept the limitations of their diseases. Who push themselves to spend time outdoors and find ways to mitigate the impact their symptoms might have on their abilities. I’ve had the autoimmune disease Myasthenia Gravis for over 20 years, and I’ve recently been diagnosed with Sjogren’s Syndrome as well – both neurological autoimmune diseases. But I’ve always been able to maintain an outdoor lifestyle; I was a ski bum in Montana for a few years, and I’ve lived/hiked/skied in VT for about 8 years. I understand what it’s like to push through symptoms to get outdoors and keep up with the activities that make you feel alive.

***

Later in the evening, a friend of Jeanie and Jake’s came to the cabin and taught an intro class on Pilates. She was witty and a great teacher, and we worked on our ‘six packs.’ Jeanie and the dinner crew made a great meal, and we spent time chatting into the night over a shared bottle of wine and some cream cheese brownies. I shared my personal project that aims to help patients tell better stories about their healthcare when they’re visiting with their doctors, and I got some good feedback and input from the group.

Overall, I was so pleased to have the chance to refresh my mind and body in the woods with some like-minded patients. I’m excited to have now joined OM officially, and I’m hoping to make it to more events and get other patients involved.

2013: a year of healthcare experience design

It’s the first day of 2014 here in Vermont, ushered in with bitterly cold temps and the crusty remains of two ice storms coating the ground in a thick shellack. A good time to reflect on the past year, to consider what impact I’m making on the world around me, and to think about ways I can keep improving.

What does ‘impact’ mean to me? I have to ask myself from time to time. As a patient and user experience designer, I want to use my design skills to help improve the healthcare experience for other patients. I want to help bring people together who are interested in changing healthcare. I want to help bring the patient voice into the healthcare discussion.

Did I make any progress on these goals in the past year? Sometimes it feels like I haven’t done much, but looking at the year in aggregate I’m proud of some of the things I’ve accomplished or helped with that have a direct impact on healthcare.

  • I worked on several projects professionally to make lab data more accessible and user-friendly for patients and doctors. I joined up with the company Medivo as a contractor, and over the last 6 months I worked Amanda, Brett, Sunay, Herry, Jessica, and the rest of their awesome team along with my friend/amazing designer Jackson Latka to help launch two products.
  • Along with Susan Dybbs I co-facilitated a workshop on Participatory Design at the fabulous ‘patients first’ Stanford Medicine X conference (organized by Dr. Larry Chu) – it went over extremely well with participants, and we hope to hold a longer workshop in the upcoming year.
  • Also at Medicine X, I got to meet a whole crew of amazing and inspiring e-patients whom (whom?) I admire greatly.
  • I had the opportunity to participate in a design workshop at the IDEO headquarters in Palo Alto as part of the Medicine X conference. During the day I got to know IDEO’s Dennis Boyle, patient advocate extraordinaire Nick Dawson, my fellow MG patient Laura , and a whole host of other highly interesting people.
  • Here in Burlington, I co-organized a meet-up group along with my friend Sam Meyer to bring together folks who are interested in innovation in healthcare – the Burlington Healthcare Innovators. We held a number of happy hours and an ignite-type event featuring 12 healthcare innovators in Burlington.
  • I got to organize a panel called ‘Patient Innovators and Instigators‘ at the Healthcare Experience Design conference last spring – highlighting how patients have innovated to make sense of their health stories. Ken Spriggs and Lana Voynova shared ways they have visualized their health.
  • In November I had the chance to organize a panel for the Digital Health Conference called ‘Better Healthcare by Design: How Data Visualization, Behavior Change Techniques, and User-Centered Design Can Create Successful Products‘; in the process, I got to know panelists and designers Steve Dean, Dustin DiTommaso and fellow e-patient/designer Molly Lafferty.
  • In June I gave a short ignite talk at the Eyeo conference in Minneapolis about visualizing my health history on a timeline, and about the opportunity for data visualization in healthcare. Lots of people came up to me after my talk and shared their stories with me, which was a profound experience for me and which I wrote about here.
  • I’ve had the chance to do a lot of interviews and usability testing sessions with patients and doctors as part of my work with Medivo and Medical Avatar.
  • I’ve continued to work on my health history timeline concept

I’m most happy with the relationships and collaboration I’ve had in the past year. Many of the folks I named above are people I just met in 2013, but I consider all of them close friends. We all share certain values and a collective vision; we support each other through design and health problems; we believe in the power of the individual and in the power of design; and we believe in patient empowerment above all.

Not that it’s all rosy. I find myself spread thin, pulled between competing priorities, putting off my passion projects by cleaning and straightening the house too much…one goal for 2014 is to clean less! And manage my priorities better. And stop eating so much chocolate. And…to cut myself some slack from time to time.

Sometimes it feels like I’m not doing all I can to make a difference. Often I wonder if I need to move away from Vermont, somewhere closer to a hub of healthcare technology action. But if last year was any indication, it’s possible to live in a place I love, spend a lot of time outdoors, maintain a good quality of life, and still be able to have an impact.

I’m looking forward to working hard and meeting more fabulous patients, designers, and collaborators in 2014.

Cathartic diagramming post-Medicine X

The hazy days post-Medicine X, as I have written about, were emotionally turbulent. I felt dazed. I had just experienced a potpourri of positive and negative experiences and thoughts, and I knew I needed to sort some of it out in my mind.

I finally had a chance on the plane back east, and I started by taking out a blank piece of paper and simply writing out the emotions and feelings and thoughts I’d had during the conference. Because I’m a bit compulsive about organization, I started grouping them into categories. As I wrote, I found that tears were falling down my face, and not only about the sad or scary things, but also about the love and pride I felt for my fellow e-patients. The process of writing down and organizing my thoughts helped me make sense of my feelings, which has always been the case for me; I have to write to really understand myself.

And then…I bought the symbolicons icon set from my friend Jory, and I decided to make a digital version of my mind map with his icons representing the categories. I’m including it here for your perusal.

 

post-conference_feelings

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.

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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.

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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.

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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.

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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.

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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).

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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.

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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.

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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.”