There’s no question that the Internet is an invaluable tool for researching technology-based patient interventions. But as you probably know all too well, the volume of information adds up quickly, and journal articles don’t tell you what it’s actually like to be a patient
Our job as health literacy practitioners is to pare down material to what’s most essential, relevant, and actionable. So it can be helpful to put the laptop away and learn about what matters to your audience a bit more directly.
One way to do this? Take a field trip to observe and learn from patients in their healthcare context.
We’ve taken this approach at Emmi over the years, and I recently spoke with a few veteran designers and artists about their insights. A few themes emerged.
Fieldwork is eye-opening.
Everyone agreed they learned surprising things when they went on-site. Health Communication Designer Angie Newman shadowed clinicians doing community outreach research for end-stage renal disease and learned how much denial people can have, and the myths that stubbornly persist. She noticed patients were really focused on how they could manage their health with diet, which unfortunately doesn’t reflect an understanding of the disease severity.
Diana Deibel, an Interactive Communication Designer who visited a client site to meet with clinicians, patients, and caregivers about dementia, noted that fieldwork allows you to use technology to solve problems beyond those we’re told exist. For example, there was an assumption that building a multimedia program for caregivers would be useless because those folks are so beaten down with responsibility – but in reality, she learned they’re starved for information.
It reminds you of the social context of health.
Fieldwork provides a glimpse into real life for patients. Interactive Communication Designer Ilana Shalowitz visited a diabetes clinic and picked up on intangible interactions (like hugs from providers) that go a long way in defining patient experience. And she learned that when she interviewed folks in the waiting room, they would bring up all sorts of topics and questions that weren’t clinical but had a huge impact on their lives, and therefore their diabetes.
During another visit at an ED discharge clinic, Ilana was struck by the logistical challenges for the patients who are uninsured or on Medicaid. This observation helped spark an intervention to help people fill out paperwork to get to a follow-up appointment.
And going back to that dementia site visit, Diana walked away with a huge appreciation for how much these folks have going on in their lives, juggling caregiving, relationship struggles, and their own responsibilities. That enabled her to adjust the tone and content in the program with a sensitivity she might not have had otherwise, which can better engage people and help them absorb information.
It reinvigorates your work.
Visiting a healthcare setting makes your work feel more personal and meaningful. As Director of Medical Illustration Erin Garvey described it, it can motivate you and reinvigorate your work in health literacy.
Medical Illustrator Jen Kincaid was able to shadow at an ostomy clinic, where she was moved by how young the patients could be, and how resilient they were.Not only was the experience key to creating accurate illustrations (like the one below), she appreciated knowing how the program could concretely help people like the ones she met.
The group also noted how inspiring it is to watch clinicians in action. Jen was impressed by the skill and warm bedside manner of the ostomy nurse she spent time with – but it also highlighted what people are missing when they don’t have access to someone like that.
Another flip side of seeing superb care is realizing how stretched and challenged providers can be, and understanding our place in the wider healthcare picture.
Fieldwork is a memorable step to improving health literacy.
Fieldwork allows you to observe a lot in a small amount of time. It helps you grasp the big picture while seeing exactly where your work fits into it all. And it’ll stick with you: to this day, Erin remembers details from a breast reconstruction surgery she watched years ago
In short, you might find that stepping away from technology for a while helps you create better technology-based patient interventions in the long run.
Emily Azari, MS is the Editorial Director at Emmi, where she works with health communication designers, artists, clinicians, and patients to ensure the quality of multimedia patient education programs and decision aids. With over 10 years of experience in health literacy, health communication, and behavior change, she’s developed materials for a wide range of topics and audiences. She contributes to Emmi’s patient engagement blog and served as a judge for the 2017 IHA health literacy awards. Reach her on twitter: @emilyazari