Arthritis Life

How to get your Patient Voice Heard to Improve Healthcare

Episode Summary

Jen Horonjeff shares how her journey with juvenile idiopathic arthritis led her to advocate for the patient voice to be central in health innovations. She also shares her journey growing up with juvenile idiopathic arthritis, pursuing a PhD and eventually co-founding Savvy-Coop.

Episode Notes

Jen dives deep into how and why she co-founded Savvy-Co-op, whose mission is to empower patients to co-create new solutions alongside health innovators. This includes a discussion of her PhD studies in human factors. 

Jen walks us through what it’s like for a patient to get their voice heard and provide feedback to healthcare companies and health innovators through Savvy, all while being monetarily compensated for their time. She also explains why it’s crucial for health innovators to seek diverse patient voices. 

Cheryl and Jen  discuss the importance of quality of life (QOL) measures as part of patient-reported outcomes (PROs).

The episode ends with a summary of Jen’s life experiences as a young person with juvenile idiopathic arthritis, and her advice for newly diagnosed patients today.

Speaker bios:

Jen Horonjeff was diagnosed with juvenile arthritis as an infant and now has a laundry list of other conditions and surprises (like a brain tumor). She is passionate about elevating and valuing the patient voice, and went on to become a health outcomes researcher, human factors engineer, FDA Consumer Representative, and, most importantly, a patient advocate. Jen earned a PhD in Environmental Medicine from NYU, and studies patient-centered outcomes at Columbia University Medical Center. 

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources. 

Episode links:

• Savvy Coop Twitter and Instagram: @savvy_coop
• Savvy Website: Savvy.coop
• Jen’s personal Twitter & Instagram: @jhoronjeff
• Jen’s LinkedIn  
• Free Handout: Cheryl’s Master Checklist for Managing RA
• Cheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
• This episode is brought to you by the Rheumatoid Arthritis Roadmap, an intensive online education and support program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.

Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Here's the show breakdown:

• 1:00 - Jen’s experience getting a phD in Human Factors, accessibility, and patient centered outcomes while balancing her Juvenile Idiopathic Arthritis (JIA). 
• 4:50 - How Jen formed Savvy Co-op: a patient owned, public benefit co-op that connects health innovators with patients to provide feedback, where patients are co-owners of the company and are often compensated for their time and expertise.
• 8:00 - Why is it important for health organizations to not only get patient feedback, but also seek diverse patient voices.
• 10:50 - Jen walks us through what it’s like for a patient to get their voice heard and provide feedback to healthcare companies and health innovators through Savvy, all while being monetarily compensated for their time. 
• 15:20 - Why it’s important to follow up with the patient after they complete their “gig,” and let the patient know how their voice had an impact.
• 17:00 - What does “patients are the expert in their care” mean, and what does  “patient centered care” mean?
• 18:15 - An example of the patient voice changing health systems: patient feedback about the importance of fatigue led to it being incorporated as a “clinical trial outcome set,” or something that’s measured. 
•  21:50: Jen’s experience serving on the FDA’s Arthritis Advisory Committee, and explanation of why quality of life (QOL) measures are so important. 
• 25:15 - Chery’s quick plug for occupational therapy in helping patients achieve the best quality of life possible.
• 26:15 - Are the current quality of life measures still relevant today, and are they sensitive enough to measure what’s truly important to patients?
• 31:15 - Issues with patient reported outcomes are not specific to rheumatology, they are common across health conditions; Jen’s example: cystic fibrosis. 
• 32:30 - Cheryl discusses the difference between basic “activities of daily living” (like dressing oneself) and “instrumental activities of daily living” (more time-consuming and cognitively challenging tasks like caring for children, preparing meals, managing finances). 
• 33:30 - Jen’s personal journey with juvenile idiopathic arthritis (JIA): from gold shots in the 1980s and being told to avoid movement and exercise, to a dance major in college. 
• 37:25 - Jen’s advice to parents of children with JIA 
• 38:25 - Why Jen feels her disease DOES define her. 
• 41:10 - Jen’s message for newly diagnosed patients: take time to reflect and grieve, acknowledge that this will suck sometimes, then try to step back and see that there are still probably ways to get to where you want to go. 
• 43:00 - where you can follow Jen and Savvy (+ Jen’s cat as a bonus!).