I’ve spent the last several months knee-deep in survey design for the ReMotion v3 Field Trials – pilot tests for the new knee design at four sites around the globe. I’ve been thinking through the type of information that D-Rev needs to inform design iterations, perfecting each question’s nuance and word choice, painstakingly formatting each page, pilot testing the 15 minute survey with board members role playing as amputees, and working with translators in three different languages. But even after all that, there is nothing that turns preparation and confidence on its head quite like getting a design in front of the end users and witnessing what works and what falls flat.
In September, D-Rev’s ReMotion Product Manager Vin and I traveled to Guatemala to kick-off v3 Field Trials there. As part of the trial launch, we deployed our data collection protocol with 12 new ReMotion users at Hospital Shalom in San Benito, Petén.
While Vin was closely observing the fittings and each amputee’s gait tests, I was busy analyzing our survey in action. What questions confused patients? Which response options on the form were ill-fit to how the interviewee naturally answered? But most of all I was meeting these amputees, finding out about their lives, what they struggle with and what they enjoy, and struggling myself with an appropriate way to quantify it all, to analyze it in an Excel sheet while maintaining respect for each patient.
For many of the amputees that we met in Guatemala, this was the first time they had ever received a prosthetic limb. We met a farmer who has been using the same homemade, wooden crutch for the last 20 years, men who wish to support their families but haven’t been able to work in a decade. Getting fit with a first prosthetic was an emotional day – a mix of joy, fear, and relief that was mesmerizing to watch. Many patients bring their families – wives, granddaughters, nephews – all eager to watch their loved one do what I have taken for granted my whole life, walk across the room.
One of the more emotionally challenging amputees for me to work with was a woman who lost her leg about a year ago. Her immobility made it impossible for her to continue her job as a cook and she has been struggling with her inability to work ever since. Like many of the patients, she was emotional throughout the interview process, but when we began to talk about her work history she completely broke down. Vivian, one of our Guatemalan partners who was assisting with administering our survey, immediately put the paperwork aside and wrapped her in a hug, whispering comforting words in her ear.
As the patient collected herself, I told her that we could stop the interview at any time and that even if we continued she could refuse to answer any question that she felt was too difficult without affecting her quality of care. But she squared her shoulders and said “preguntame” over and over – “just ask me, ask me.”
When asked to rate her satisfaction with her current device on a scale of 1 to 10, she just shook her head and said, “I’m devastated.” And the little smiley face and frowny face icons on our Likert scale seemed to mock the shockingly real life they were designed to represent. While I sat there witnessing her strength despite this huge struggle I looked critically at the small snippets of her life that we were able to capture on the survey and my job as a data collector seemed insignificant.
How do you collect data on someone’s life with respect? How do you portray someone’s life experience quantitatively without diminishing that person to just a number?
I think you show respect by being a person first and a data collector second. No matter how hard you have worked on a collection protocol, no matter how great you think it is, you can’t be afraid to turn it over and put it aside. No matter the importance of the data – everyone is a person first and a data point second.