How Has COVID-19 Impacted Patients with Rare Conditions?

How Has COVID-19 Impacted Patients with Rare Conditions? By Judy Chandler Over 600,000 Inspire members are affected by rare conditions. As a vital partner to 40 rare disease non-profit advocacy organizations, Inspire’s rare disease patient and caregiver members represent over 3,000 rare conditions. Serving as a common point across these diverse conditions, Inspire was uniquely positioned to learn how rare disease communities were being affected by COVID-19.   First, we noticed a surge of COVID-19 posts across all of Inspire through the month of March. Inspire’s research team began by reviewing some of these member communications to identify [...]

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Oct 2020By |0 Comments

How has the COVID-19 Pandemic Impacted Chronically Ill Patients? Patient Reported Outcomes

How has the COVID-19 Pandemic Impacted Chronically Ill Patients? Patient Reported Outcomes By Kathleen Hoffman, PhD, MSPH Research in health and medicine has largely used quantitative methods. Using mixed methods, combining qualitative research with quantitative, is still relatively new. As the COVID-19 pandemic moved the world home and online, our team of qualitative researchers1 (while respecting member privacy) observed and documented themes within the online communication of chronically ill patients on Inspire. Inspire fielded a quantitative survey to document the impact. Telehealth Appointments In May the team observed and documented comments about telehealth appointments. They found patients [...]

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Jun 2020By |0 Comments

How is COVID-19 Impacting Patients and the Life Science Industry?

How is COVID-19 Impacting Patients and the Life Science Industry? By Jeff Terkowitz As a virtual business, Inspire has a head start in dealing with social distancing and COVID-19. Many of our employees work virtually. Our patient and caregiver members have always communicated virtually and during this time are actively engaged in discussing the impact the Coronavirus and COVID-19 are having on their behaviors, concerns and needs. Proactive as ever, Inspire created a new resource for Coronavirus including a map of where people are discussing their experiences, videos of Inspire members participating in our #keepusallsafe public awareness [...]

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Apr 2020By |0 Comments

Continuing Critical Patient-Centric Research Virtually during COVID19

Continuing Critical Patient-Centric Research Virtually during COVID19 By Richard Tsai The COVID-19 pandemic is forcing all kinds of businesses and research institutions to find ways of working that provide results similar to what we’re used to gaining from human social interaction. For example, being mindful of the time healthcare professionals need to dedicate to the pandemic has resulted in tremendous delays in HCP-based market research programs. Many clinical trial sites have temporarily suspended work that not only impacts existing enrolled patients but also greatly reduces recruitment. How can we continue critical research programs amidst these challenges? As [...]

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Mar 2020By |0 Comments