November 10-15

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ACR Convergence 2023

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Put patients in charge of making positive change for themselves and others


3 minutes

Jen Horonjeff, PhD
Jen Horonjeff, PhD

The entire care team has the power to put patients at the forefront of their care, and that can also help impact the larger healthcare landscape.

During this year’s ARP Keynote Lecture: Empowering Patients to Make an Impact on the Future of Healthcare, Jen Horonjeff, PhD, founder and CEO of Savvy Cooperative, shared her personal experiences as a guide to help patients help themselves and also become helpers to others. Dr. Horonjeff was diagnosed with juvenile idiopathic arthritis (JIA) as an infant and also has other rheumatic diseases. Savvy is a patient-owned healthcare co-op that helps people share their health experiences with companies and researchers.

Her own experiences and learning about the experiences of others show the critical role caregivers must play beyond just managing a patient’s medications. The care team can encourage and guide patients into opportunities like peer support or involvement with advocacy organizations. That kind of support and encouragement can change a patient’s trajectory just like it did for Dr. Horonjeff.

“Even on those tough days when you’re running behind, probably juggling your own personal challenges, those eight-to-15 minutes that you sit down with patients and their caregivers, you have the opportunity not only to prescribe medication, but to listen to them and to help identify the things that you can recommend to uncover what’s most important to them,” Dr. Horonjeff said.

Dr. Horonjeff has served on the voting committee for JIA treatment guidelines, which included patients providing feedback on recommendations. She noted that priorities for patients and parents of patients didn’t always align with strict treatment guidelines and the nuances of living with JIA or another disease.

She discussed one rheumatology research study that used wearable devices to track steps and activity, with the hypothesis that as pain went down, activity would increase. But this didn’t happen with one patient. After researchers made sure the device was working correctly, the patient told them that she was an author, and that having her disease under control meant being able to sit down and write.

“So the prescribed outcomes that those researchers had did not fit this individual. Are they an outlier, or are we just not seeing the broader picture of what patients truly want?” Dr. Horonjeff said.

After earning her PhD and setting forth in a career focused on patient-centered outcomes, Dr. Horonjeff’s patient and professional lives overlapped in ways that made her sought after for many committees and projects. But she knows that her perspective as a white woman with a doctorate who lives in New York City doesn’t match the experiences of most of the other 54 million Americans with arthritis. So she’s working to develop ways to connect people with those diverse perspectives and different demographics to join in sharing their perspective as patients.

From the clinical and research side, Dr. Horonjeff said, encouraging this needed participation also requires a financial commitment to take the time and energy to formalize patient involvement and reimburse them for their willingness to help. Too many people with important perspectives can’t afford financially to take time to volunteer as a patient voice.

“To count the amount of times I’ve had to justify why patients should be compensated, I would run out of fingers and toes and all sorts of appendages,” Dr. Horonjeff said. “I know this is an ongoing challenge, but this brings so much value. This has been my soapbox that I’ve had for many years, seeing the patient as an equal in terms of what they can bring to the table.”

Registered attendees have on-demand access to watch a replay of the session through Wednesday, March 11.