integrating the patient and caregiver voice into the development of treatments for diseases Archives

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance
Patient insights, Patient communities, Patient-focused drug development

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance By Kathleen Hoffman, PhD, MSPH “The sickest I've ever been!" wrote a participant in Inspire’s COVID-19 HealthJourney survey about surviving COVID-19. Another went into greater detail when asked to share their COVID-19 story. I’ve had systemic lupus (SLE) and Discoid Lupus for 25 years. I’ve been on Hydroxychloroquine since my diagnosis. [In March] I woke with a strep-like sore throat, high fever, migraine, my body was in horrible pain. I called the doc. After being masked, gloved and gowned I was whisked into an isolated room, handled like [...]

Mar 2021By Kathleen Hoffman, PhD, MSPH|0 Comments

COVID-19 vaccines and vulnerable populations: Over 26K participate in ongoing study
Patient insights, Patient communities, Patient-focused drug development

COVID-19 vaccines and vulnerable populations: Over 26K participate in ongoing study

COVID-19 vaccine and vulnerable populations: Over 26K participate in ongoing longitudinal study By Richard Tsai Crowd-sourcing info for a friend: have any of you who have lupus SLE and/or discoid taken the vaccine? Which one? What were your side effects? Thanks for sharing. — Brittney Cooper (@ProfessorCrunk) March 9, 2021 COVID-19 vaccines have been released. Are people hesitant about getting vaccinated? How are people responding? How do people with comorbidities, like cancer, psoriasis, asthma or sarcoidosis feel about getting vaccinated? If they have received the vaccines, how have they responded? It is now possible to find out [...]

Mar 2021By Richard Tsai|0 Comments

Where Do You Start When Searching for Exceptional Responders?
Patient insights, Patient communities, Patient-focused drug development

Where Do You Start When Searching for Exceptional Responders?

Where Do You Start When Searching for Exceptional Responders? By Richard Tsai Before 2012, if a cancer clinical trial had only one successful remission amid a field of failures, the drug under trial was thought to be unsuccessful. We weren’t asking a key question: What made it work for that one participant? The one remission was an exceptional responder. Exceptional responders are in every clinical trial, but until whole genome sequencing (WGS) became available, it was impossible to scrutinize them. In 2012, researchers at Memorial Sloan Kettering used WGS to learn what caused the remarkable and durable [...]

Mar 2021By Richard Tsai|0 Comments

Portraits of resilience: How patients and caregivers cope through the COVID pandemic
Patient stories, Patient communities, Patient insights

Portraits of resilience: How patients and caregivers cope through the COVID pandemic

Portraits of Resilience: How Patients and Caregivers Cope through the COVID Pandemic By Richard Tsai The word “storytelling” invokes a pleasant image of listeners around a campfire, listeners from any era and any culture. It could, however, just as accurately evoke an image of brain chemistry that creates direct experience and even changes behavior: I originally discussed this concept in an earlier post, “Why Storytelling Builds Brands.”1 Research shows that people remember stories better than mere facts and that the brain can store more information and retrieve it more easily when it is in story form.2 Storytelling [...]

Feb 2021By Richard Tsai|0 Comments

Next Generation Online Health Communities
Patient insights, Patient communities

Next Generation Online Health Communities

Next Generation Online Health Communities: Data empowering patients and caregivers improves care and accelerates research By Richard Tsai The World Orphan Drug Congress USA 2020 (WODC 2020) provided four days of powerful panels and keynotes about collaborations, successes and failures in creating what rare disease patients and families need and desire most – effective treatments for their conditions. In one failure turned to success, Kim Stephens shared her story involving inappropriate clinical trial endpoints. Stephen’s son has Hunter Syndrome, an extremely rare inherited condition where children lack an essential enzyme in their cells that eliminates waste . [...]

Sep 2020By Richard Tsai|0 Comments