Having dedicated decades to autoimmune patient advocacy, I have witnessed the remarkable emergence of patient voices in rheumatology, supported by the tools of the digital world, most directly by novel communication modes such as social media that support online communities. Thus, my virtual-first, digital rheumatology clinic rheumission was built on
With the explosion of social media in today’s technological landscape, patient voices are increasingly relevant in rheumatology. Across platforms, countless patients have stepped up as leaders and influencers, using their platforms to share stories and empower others. As a patient and patient advocate myself, I’m extremely appreciative of the work
In my mission to connect with autoimmune advocates, I have also collaborated with forerunners of patient advocacy and healthcare innovation. Advocacy spans beyond social media, and delves into the sectors of digital health, consulting, and innovation. In this second part, we’ll dive deeper into the dynamic world of advocacy, where
Why is a patient-first strategy mission-critical for digital health companies? My passion for strategic patient-first care is built on decades of living with autoimmune disease and advocacy for the invisible autoimmune epidemic. Despite affecting as many people, autoimmune is 50 years behind cancer: under-recognized, under-researched, and with mostly underserved patients.
Autoimmune Patient Journey The convoluted journey of patients with autoimmune and inflammatory diseases (AIIDs) has many stages. Unlike cancer, diabetes, and heart disease, there are no population screening nor public health education programs for AIIDs. This blocks the path to early diagnosis and preventative autoimmune care. As early symptoms fluctuate
The Visible Chronic Disease Epidemic Click the arrows next to the slide to view the sources. The chronic disease population has grown substantially in recent years since modern medicine has extended the human lifespan. Depending on sources, 40-60% of Americans (128-140M people) have one or more chronic health conditions. Moreover,
Many Convoluted Stages Along AIID Patient Journeys The convoluted journey of patients with autoimmune and inflammatory diseases (AIIDs) has many stages. Each stage presents challenges that may cause patients to drop out before they get the care they need. Unlike cancer, diabetes, and heart disease, there are no population screening
Slow & Uncoordinated Path to Diagnosis & Treatment Today, autoimmune patient journeys are typically long, convoluted, and frustrating; from first awareness of symptoms to scheduling medical visits, diagnosis, treatment, and long-term care. Since many autoimmune & inflammatory diseases (AIIDs) emerge in youth or middle age and last a lifetime, the
Invisible Epidemic of Autoimmune Disease As we continue to illuminate the hidden costs of the long-ignored epidemic of autoimmune disease (AIID), we must shine a light on the highest autoimmune cost: Specialty pharmaceuticals. Current data largely underestimate total AIID costs, and accurate numbers are few and far between. Through our