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 a foundation specifically attuned to listening to patient voices. We are building our unique patient-first strategy and have worked tirelessly to ensure a collaborative environment where patients truly feel heard. Part of employing this stra ..read more

With the explosion of social media in today’s technological landscape, patient voices are increasingly speaking up in rheumatology.  Across platforms, countless autoimmune patients have stepped up as leaders and influencers, using their platforms to share personal stories and empower others on their journeys.  As a patient and patient advocate myself, I’m extremely appreciative of the work that these individuals put into sharing stories and valuable advice. Furthermore, in my role as the Chief Patient Officer of rheumission, I’ve had the honor of connecting with numerous autoimmune p ..read more

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 new leaders and innovators are revolutionizing the patient community!  Patient Experience and Healthcare Communication Specialists Firstly, Amanda Osowski is a notable figure with over a decade of experience in healthcare communication. As a patient experience l ..read more

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. Patients are not at the center of research, diagnostic or therapeutic development, or clinical care delivery. This post details how to create a mission-critical, patient-first strategy for digital health companies. Throu ..read more

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 & worsen, people eventually seek help from their primary medical providers. However, scheduling an initial conventional care visit can be long delayed, especially if symptoms are vague or unalarming. Providers too often refer patien ..read more

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 syndromes (including triggering autoimmune diseases) and immunology. This report explains why finding big-picture data on autoimmune has been so difficult (we’ve tried for 10 years!). There has NEVER been any national autoimmun ..read more

Data Issues in Autoimmune Data for autoimmune diseases are substantially lacking and inconsistent. The US gathers no statistics on autoimmune diseases as a group, nor even national data on marquee diseases. Therefore, total autoimmune incidence & prevalence figures are, at best, estimates. Unlike cancer, there is no national strategic research plan for autoimmune research, no national effort to collect data on AIIDs, and no long-term, population-based epidemiological studies. This both stems from and contributes to a lack of awareness of autoimmune diseases and how prevalent they are. The ..read more

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 syndromes (including triggering autoimmune diseases) and immunology. This report explains why finding big-picture data on autoimmune has been so difficult (we’ve tried for 10 years!). There has NEVER been any national autoimmun ..read more

Data Issues in Autoimmune Data for autoimmune diseases are substantially lacking and inconsistent. The US gathers no statistics on autoimmune diseases as a group, nor even national data on marquee diseases. Therefore, total autoimmune incidence & prevalence figures are, at best, estimates. Unlike cancer, there is no national strategic research plan for autoimmune research, no national effort to collect data on AIIDs, and no long-term, population-based epidemiological studies. This both stems from and contributes to a lack of awareness of autoimmune diseases and how prevalent they are. The ..read more

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 autoimmune diseases (white bubbles) onto the different medical specialties that treat them. Adding up only the 14 marquee diseases on the chart produces an autoimmune patient population of at least 62-75M people, much larger than the top-down estimates ..read more