ACR CONVERGENCE 2020—In her ARP keynote address on Friday, Nov. 6, Empowering Patients to Make an Impact on the Future of Healthcare, Jen Horonjeff, PhD, described a study in which researchers gathered data on pain and activity level among arthritis patients. In her view, the study provided a cautionary tale.
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Researchers expected the study subjects would be more physically active, as recorded on wearable devices, as their pain levels dropped. But for one patient, as her reported pain levels dropped, her activity level did not increase.
They found out why when they talked to the patient: She was a writer, and being pain-free allowed her to spend time writing—a sedentary activity.
Dr. Horonjeff—founder and CEO of the Savvy Cooperative, a patient-owned organization designed to improve patient input into medical research and innovation—said this study offers a stark illustration of how the expectations and goals of scientists and researchers can differ from those of patients.
To help healthcare professionals better meet patient needs, Dr. Horonjeff offered nine lessons.
Lesson 1: Arthritis Can Be a Lonely Place
As a juvenile arthritis patient herself, Dr. Horonjeff said she can’t remember a time when she did not have an arthritis diagnosis. She said she always felt like an outsider. Doctors, teachers and others (except her parents) routinely made assumptions about what she was capable of and set limits for her. She didn’t meet another person with arthritis until she was a teenager.
Lesson 2: Have Cool Stuff
Health professionals shouldn’t underestimate the value of little things to make the patient experience special at doctor visits. To this day, she remembers a porcelain bird mobile she would look at as a child during appointments. She also remembers little plastic, jumping-insect toys and Snoopy Band-Aids.
Lesson 3: More Than 1 Person Is Affected by Arthritis
The patient, their immediate family and caregivers are all affected by rheumatic disease, and care plans must keep in mind the effects on caregivers and family. “Different personalities need to be dealt with in a really deliberate way,” Dr. Horonjeff said.
Lesson 4: Don’t Forget the Patient Priorities
Too often, she said, clinical trials are designed and conducted without input from patients on what they would like to see achieved to make their daily lives better. For example, an oral therapeutic, rather than infusion therapy, may make dramatic differences to certain patients—perhaps they’re studying abroad or have a fear of needles, she said. “If we don’t stop and do the work to understand what matters to patients early on, we don’t actually know when [a therapy] comes to market if it’s solving the problems patients want [solved],” she said.
Lesson 5: Diversity Matters
As someone with an advanced degree in environmental medicine as well as experience as a patient, Dr. Horonjeff began to be asked frequently to weigh in on health initiatives. She would say yes, but began to see the routine as a bit problematic.
“I looked around, and—last time I checked—there were 54 million Americans with arthritis,” she said. “So the perspective of somebody who’s white, holds a PhD and lives in New York City is not representative of the 54 million Americans with arthritis.”
Health professionals must take steps to connect with a broad swath of the patient population. She suggested starting with small steps toward engagement, learning from those steps and moving on from there.
Lesson 6: Equitably Value Patients
Patients who participate in committees for health initiatives and research projects should be compensated for their work. Participation in research projects is not a career demand for patients, unlike health professionals. So compensating a patient working in a retail job who has childcare needs, for example, to participate in research discussions is fair and necessary to obtain diverse input, Dr. Horonjeff said.
Lesson 7: Don’t Make Crap
She said scientists should be sure they’re innovating the right things. For example, telemedicine has been fine-tuned during the pandemic, she said, but it doesn’t meet the needs of some patients, who may not have a calm or private environment in which to participate in a virtual doctor visit from their house.
And the idea of digital therapeutics, such as apps, may sound great, except many patients don’t know what digital therapeutics are, she said.
Lesson 8: Prescribe Peer Support
Through advocacy organizations and participating in conferences, a doctor “can help open people’s eyes to the opportunity to connect with patients,” she said.
“That’s what truly changed my life—when I finally took these cruddy situations I was living through and flipped them on their head and used them to effect change and support other people.”
Lesson 9: You Have the Power to Empower
Health professionals have a chance to understand what a patient’s goals are and work to get them there, even during a 10-minute patient visit. Health professionals should talk to their peers for ideas on how to do this, she suggested. For her, the suggestion of participating in a juvenile arthritis conference made all the difference.
“It was my care team, it was my rheumatologist, who first got me involved,” she said. “I was able to connect with others, and I didn’t feel so ashamed of my disease.”
Thomas R. Collins is a freelance writer living in South Florida.