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 [...]
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? [...]
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 [...]
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 [...]
Accelerating Rare Disease Research By Richard Tsai COVID-19 has challenged the non-profit arena’s fundraising arm, which is largely based on face-to-face events like galas, runs and walk-a-thons. This limit on the number and amount of donations has occurred just as rare disease patient organizations have reached a tipping point in their influence [...]
Why Limit Awareness Trial Usage Surveys (ATUs) to HCPs? Patients and Caregivers Provide Needed Insights By Richard Tsai One online glossary defining ATUs (Awareness, Trial, and Usage studies) described them, in part, as “survey[s] to measure consumer awareness, trial, and product usage for a product category and/or brand...” But in a [...]
Involve Pharma Marketing Early in Drug Development By Richard Tsai In 2009, PricewaterhouseCooper published a paper predicting the landscape of pharma marketing in the decade to come titled “Pharma 2020: Marketing the Future - Which Path Will You Take?” What were they expecting then, and how does it compare with today’s remarkable [...]
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 [...]
Genetic testing: What patients and caregivers understand and value By Richard Tsai There’s been an explosion of information about genes, genetics and genomics since completion of the Human Genome Project in April 2003. Stories about remissions achieved through pharmacogenomics and immunotherapy and disease risk factors identified through genetic testing fill both [...]
Wearable Devices Revolutionize Clinical Trials...But when? By Richard Tsai Here is the vision: Wearable devices open the floodgates to clinical trial participation. Patient-centric and portable, they’ll free the participants from multiple visits to the clinical site. Technology collects millions of data points per user per day, and then transmits it directly to [...]
