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
May 2022 Report This May 2022 549-page NIH report represents a significant breakthrough in autoimmune research focus. Its recommendations have major downstream implications for CDC statistics, basic research, R&D, medical education & clinical guidelines. Funded and launched in 2019, before the pandemic but even more relevant since COVID-19 spotlighted post-viral
Autoimmune Diseases are Siloed by Specialty Click the arrows next to the slide to view the sources. Looks a mess, doesn’t it? It is! Autoimmune diseases are scattered across many different medical specialties, creating a siloed landscape in which patients must coordinate and navigate for themselves. This illustration maps high-prevalence
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,
Digitally enabled, virtual first care (V1C) offers a potential solution to convoluted autoimmune patient journeys. V1C especially offers significant advantages for autoimmune and inflammatory disease (AIID) patients in accessing specialized care. Virtual specialist practices get patients to a rheumatologist or gastroenterologist much faster (days rather than months) and with less