Think about the last time you went to see a doctor.
Imagine sitting in the waiting area, and then going into the exam room. You probably waited for awhile, staring around, or maybe looking at your phone. Then the doctor breezed in and the conversation started.
How did you describe what was going on? Did you plan what you were going to say? Did you bring notes? Did your doctor ask questions? Did you get the feeling he or she really understood what you were saying?
There are lots of barriers to communication in a doctor visit:
- Patients may have a complex array of symptoms that are hard to describe
- Patients are not always feeling well enough to clearly articulate what’s happening
- Not all people are great verbal communicators ‘on the spot’
- Younger children can’t always articulate what they’re feeling
- Power dynamics or a ‘doctor knows best’ mindset may prevent people from speaking up or challenging their doctor
- Doctors often do not have the time they need to really understand a patient’s story
- Doctors are trained to narrow down possible causes (differential diagnosis) instead of asking for the whole story
What can we do? Start with pictures.
Katie McCurdy is an autoimmune patient with multiple conditions and a constellation of ever-changing symptoms. Chethan Sarabu is a pediatrician who sees young patients who can’t always express themselves well with words. Both of us have experimented with bringing imagery into the patient encounter, and both of us have experienced huge benefits.
Katie’s Story — the patient perspective
As a patient with two (and counting) autoimmune conditions, I often experience mysterious symptoms. Heart palpitations, a hot face, gut problems; these things don’t neatly belong to any of my official diagnoses. I find myself struggling to determine which kind of provider I should see. (‘Can they really help me?’ I’m always thinking.) Once I’m at an appointment, I’m often at a loss to figure out how to make the doctor really understand what I’m feeling.
Fortunately, I’m also a designer who enjoys drawing pictures to communicate concepts. So a few years ago I started using pictures to explain how I felt and show the trajectory of my illness.
It started when I made an appointment with a doctor who did not take insurance. That first visit was going to cost me over $500. I scrambled to prepare, with a goal of making efficient use of the time, and ended up creating a timeline of two of my major symptoms (muscle weakness and gut symptoms) over the course of my lifetime.
I printed the timeline, brought it to my appointment, and used it to walk the doctor through my life history. It helped me tell a more coherent and structured story, and it helped him understand at-a-glance what I was saying.
Since that time, I’ve used this timeline with every first visit with a new doctor, and I’ve heard only positive feedback. Multiple doctors have said, and I quote, “that’s the coolest thing ever.” Many expressed that they wish that patient medical records were formatted in such a timeline. (Chethan is going to tell you more about this.)
Timelines have been an important communication tool for me, but sometimes a timeline isn’t what I need. Recently I experienced a number of new and scary symptoms — among them stronger heart palpitations, dizziness, a hot and red face. I had an appointment scheduled with an endocrinologist, but it took about 5 months to get in to see her. So in the meantime, when these symptoms flared and I felt scared and out of control, I created drawings of how I felt.
I like to draw my symptoms on a body form and use colors and shapes to indicate sensation. Here are some examples:
In these drawings I made my cheeks red or pink (even if they didn’t look red, they felt red.) I drew a shape on my neck to show that I was feeling heart palpitations in the pit of my neck. Wavy lines of dizziness radiated from my head. These symptoms were frightening and confusing, but drawing them helped me wrap my mind around them and make them less scary.
At the Endocrinology appointment, I laid all my drawings down in a row next to the doctor’s computer before she got in the room.
She started the conversation by talking with me, and I shared my notes with her; then we turned to the drawings and she scanned through to make sure she’d gotten everything.
It seemed to go well. I felt that she heard me, and she ordered a bunch of tests based on the symptoms I was having. We figured out that the problem was a hormone imbalance resulting from years of taking prednisone, and I have been able to fix my symptoms by taking supplements.
What these experiences have taught me:
- Doctors are people, like anyone else; although they are trained to use verbal communication, visuals help increase their understanding and prevent them from having to keep as much information in their ‘working memory’ at any one time.
- Having a visual prompt has helped me communicate with doctors more efficiently and effectively.
- The act of preparing and creating visuals about my health has helped me feel more in-control and knowledgeable about what is happening to me.
Chethan’s Story — the doctor’s perspective
As a pediatrician I have often been surprised by the lack of visual tools such as the ones Katie has created. Visual representations have the ability to richly communicate a wide array of information more efficiently, which can be really useful in a short office visit. Graphical representations can also help identify patterns and generate insights that otherwise might be missed. We do use a limited amount of visual communication in the form of growth charts and graphical plots of vital signs and laboratory data, but there are many more possibilities for visually augmenting medical information.
Timeline visualizations can be crucial for understanding both long and short timespans. One of the most common reasons for a child to show up at the pediatric ER is with a fever with a few other symptoms such as a cough or rash. The majority of the time it tends to be a viral illness but knowing the order and time in which the different symptoms occurred is extremely important. From my experience it is often challenging for a worried parent to remember which symptoms came first and if the fever started 3 or 5 days ago. The ability to separate a more benign viral illness from more serious conditions such as Kawasaki disease depends on parents remember these details. Visual aids can help parents keep track of these nuances.
Moving beyond timelines, visual communication can aid in a number of other aspects of healthcare as well. Annual well-child checks are designed to help guide children to becoming healthy adults. There are conversations about nutrition and physical activity which primarily rely on verbal communication and memory recall. We often ask parents to recall what their children usually eat for breakfast, lunch, and dinner. It would be easier and more accurate to just have parents share photos of their children’s meals.
Draw your veggies
During a routine well child checkup a mother lamented that her daughter hated vegetables and so while we were talking I asked the daughter to draw any vegetable that she liked and she went on drawing over 15 different vegetables. Her mom was surprised that she even knew that many. It sparked a conversation between the mother and daughter, and I encouraged her to go to the grocery store and have her pick out some of the vegetables she drew.
Draw where you play
What is truly exciting and empowering is using visual communication to elicit children’s own opinions about their health. “Children’s ability to retrieve information about their experiences may be more readily accessed by stimulating their perceptive senses than by semantic stimulus.” Research suggests that starting with drawings could open a child-centric dialogue about matters that are important to them.
This inspired me to study the use of drawing by children more systemically. While they were waiting to be seen we gave (6–12 yo) crayons and a paper that asked to draw where they like to play. The visit with the doctor then started with a discussion of the drawing inviting children to have greater participation in their visit. Moreover it has the potential to help the doctor better understand a child’s environment which in turn enables better advice.
Facial pain scales
For many years we have used the Wong-Baker facial pain scale to aid children in identifying what they feel. This is a great example of a widely used visual communication aid; we just need many more like it.
The Big Challenge (physician documentation)
While drawings and other forms of visual communication open up conversations, the challenge for the physician is being able to document that information. I believe that the more effectively and seamlessly a physician is able to document information/communication then there is a greater chance that it will be emphasized in the discussion.
Currently EMR systems are designed for textual input of verbal communication but there is growing functionality for adding photographs. This was primarily driven by dermatologists who needed to show pictures of skin rashes. Also there is a long history of surgeons adding paper drawings to the chart to better describe the details of the surgery they performed. We have now embraced electronic systems but have lost some of the easy workflows we had with paper. If a patient brought in a visual timeline a physician could save a copy in their folder. While external documents can be scanned into an electronic chart, the organization and mechanisms of doing this are more complicated.
Let patients help
Once we have a more robust electronic system that allows patients like Katie to seamlessly share their visualizations into their digital chart, we will really be able to augment the conversation. The Open Notes organization has recently embarked on a new project called OurNotes, “an initiative to promote active patient engagement in health and illness that invites patients to contribute to their own electronic medical records.” It’s exciting to think about this new form of participation and the potential for better visual communication; in the meantime, we’ll continue to be creative with the analog and digital health tools we do have.
Patient resources & inspiration
- You can print and fill out this worksheet that Katie created to help other patients create their own timelines and symptom maps.
- Doug Kanter is a designer and photographer who has used data visualization to help him chart and understand his diabetes — very inspiring.
- Sonia Kneepkens is an illustrator who has worked with patients to chronicle their health journey using drawings; she calls the project Health Chronicles and it’s worth a look.
- Dr. Catherine Rose is an engineer and mom whose daughter has many complex medical issues that she needs to manage and communicate about. She created a schematic to use in urgent situations and mapped certain symptoms on a body shape. Check it out.
Drawing tools for doctors
- Nicholas Felton has captured and represented his life data graphically over a number of years, and released annual ‘reports’.
- Gyrosco.pe helps you assemble different data streams like photos, activity, weight, and more to develop a picture of your wellbeing.
What examples have you seen? Let us know in the comments.
Whether you are a doctor, patient, nurse, caregiver, designer, entrepreneur, administrator, or someone we haven’t listed, consider joining us at this fall’s Medicine X conference for a workshop on using visual communication in doctor visits. We would love to share with you and learn from you!