Many people of color with psoriatic disease7 face barriers to receiving equitable medical care, including delayed diagnosis, misdiagnosis and limited access to diagnostic testing. In 2020, Johnson & Johnson co-created Determi-Nation, a health movement, with patients, advocates, and healthcare providers to help develop tangible, long-term solutions to address these inequities. In 2023, Determi-Nation launched the following solutions:
- Beyond the textbook: Psoriatic Disease in People of Color: An HCP educational resource that includes images of how psoriatic disease presents on different skin tones, patient and expert perspectives and actionable insights for inclusive communication.
- Patient navigation program with SUNY Downstate: A program in partnership with SUNY Downstate Health Sciences University in Brooklyn, NY, which enlists medical students to serve as patient navigators, in partnership with medical fellows, to help 200 at-risk patients with psoriatic disease navigate appointments, fill prescriptions, secure lab tests, translate information from their doctors and manage concerns between appointments. Based on participant feedback and strong initial results, we are planning to provide institutions with a roadmap to replicate this care model.
It matters to me
Howard Chang, Determi-Nation Psoriasis Patient Advocate
Why did you become a patient advocate?
“Both of my parents have psoriasis. I’ve been on a 40-year journey with psoriasis and been part of Determi-Nation since the beginning as a patient advocate. In my family, I’ve seen how older Asian Americans can face obstacles, barriers and difficulties with their psoriasis diagnosis.”
What have you achieved?
“I’m proud to have contributed my patient perspective to a first-of-its-kind healthcare provider resource called Beyond the Textbook. This educates healthcare providers on how psoriatic disease presents in people of color and how to navigate conversations with people of color in culturally inclusive ways.”
What have you learned along the way?
“I’ve learned persistence, empathy, patience and the importance of advocating for others. Wellness and health are not only physical, but they are also holistic and communal. The burden of healthcare should not be on the patient with a chronic illness. The burden needs to be put back on the healthcare system so no one falls through the cracks. Determi-Nation helps to address this.”
7Psoriatic disease refers to plaque psoriasis (PsO) and psoriatic arthritis (PsA)