"A system based on greed will never be good enough. But a system based on solidarity has a chance."
“At the hospital, I kept getting asked the same question over and over again – our systems aren’t capturing information in a way that takes the burden off patients,” said Katie. “Our tech systems need to be considerate. The whole system and how it’s designed to help people work together; it needs to be considerate.”
Katie McCurdy is a user experience designer and researcher focusing on healthcare, drawing from her experiences as an autoimmune patient. “As a longtime patient and patient advocate, I have a deep understanding of the problems patients face, and through my personal experiences and past research and design projects, I have developed a strong sense of the obstacles providers are facing.”
Years ago, aiming to make sense of a set of strange autoimmune symptoms, Katie created a visual timeline of her experiences to help express herself during limited time with a new clinician. “You have such a loss of control and confusion and anxiety when things are happening with your body and no one can figure out why. That doctor visit, I realized that bringing my story in this very visual format helped me take control of the conversation; it helped me remember what I wanted to say and structure the conversation in a more coherent way. I used this [visual] format in a number of subsequent visits and it was a helpful way to tell my story and very helpful for the doctor as well."
She added, ”multiple doctors have told me ’that’s the coolest thing ever.’”
Since that time Katie has created Pictal, which is a set of worksheets that patients can use to create a health history timeline and show how symptoms look and feel on their body. "As a patient, I have extensively used timelines to efficiently talk about my own health history, and I have also used drawings on body shapes to show my symptoms. I decided to create worksheets that would help other patients could use to do the same." People can download the worksheets and use provided visuals, or create their own interpretations, to map the symptoms they are feeling.
“It’s one thing for a doctor to hear someone tell them what’s wrong. Another thing to see exactly what they are feeling.”
"I have a vision of better collaboration and mutual understanding. Patients have so much information! And doctors want to know that information. The problem is that many patients don’t have the tools or time to tell their story efficiently and coherently.” Working within a system that often whittles patient/clinician interacts down to a single-digit number of minutes, the ability to streamline collaboration is more important than ever. Through this tool, patients of varying health literacy levels can share their experiences and symptoms, helping bring their clinicians up top speed quickly during a visit, ultimately leading to more productive discussions.
How often do you tell the truth, the whole truth, and nothing but the truth at a visit with your clinician? When your doctor asks, “How often are you exercising,” my inclination is to lean back and move my arms as if I were running. “Exercise? Every day! Nine times a day? A lot.”
Which isn’t always the full truth. What makes honesty so challenging to achieve in the doctor's office? Why do patients feel that total transparency isn’t encouraged, or embraced?
We asked some patients for their perspectives, and here is some of what they shared:
“I actually try to be super honest but sometimes I find doctors to be leading with wanting specific answers. There’s also the guilt. I don't care what the doctor thinks of me but honesty invites more guilt to myself that I'm not doing better.”
“I'm afraid of being labeled ‘non-compliant.’ We have a laundry list of things to do and if I only get nine out of ten done, then I feel like a failure, instead of celebrating the nine things I did well! I struggle with this.”
“I think, for me, I know what I should do. But in reality, doing it every day is exhausting and I get sloppy. But I'm not sure my doctor could ever understand that. So I don't feel I can admit it.”
“Because we know what we are supposed to do, but no one can do the "right" thing 100% of the time and we don't want to be critiqued for it. I LOVE my medical team, but I still don't want them to think I am not 100% perfect.”
Even clinicians found themselves hesitant to share fully during their own visits as a patient. One shared, “I'm a doctor and even I find myself stretching the truth about how much I exercise when I see my endo. It's almost feel more pressure as a doctor to stretch it because I feel there are certain things expected of me- that somehow I'm not allowed to be human.”
Another said, “My perception, when people lie, is that they've been scolded or "yelled at" for not following their prescriptions perfectly, so they are afraid it'll happen again. Once I validate their struggles, the entire conversation changes. Unfortunately, many clinicians don't have time to do that.”
So none of us are perfect, but we're not sure how much imperfection we're allowed to share before we put our care at risk?
A few years ago, we were working with a primary care practice in New Haven to develop our reflection tool. Two of the questions on the document are....
- What is one thing your doctor is asking you to do for your health that feels like a burden or feels harder than it should?
- What is one thing your doctor is asking you to do for your health that is helping you feel better?
We found that people often put the same thing in both categories. From the resulting conversations, it seemed they were looking for a way to say "I'm trying" to their clinician.
"I'm trying to eat better and exercise more. But it is also really hard."
And when they were able to do this, clinicians almost always responded with empathy. The patient's willingness to be vulnerable opened up a space for the clinician to acknowledge that none of us is perfect and making an effort is often the best we can hope for.
So patients - in your next visit, consider telling your clinician what you're trying to do and see if that vulnerability opens up a space for careful and kind care in your visit.
And clinicians, consider what you could be doing to create an environment in which patients feel more comfortable being vulnerable.