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 [...]
Accelerating Rare Disease Research
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 on government and industry. According to Malcolm Gladwell, the “tipping point” is “the moment of [...]
COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials
COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials By Kathleen Hoffman, PhD, MSPH On a recent Pharma Talk Radio podcast called, The Impact of COVID-19 on Clinical Trials: Where are We? And Where are We Going?, three subject matter experts discussed how they see COVID-19 impacting the future of clinical trial research. What needs to change?1 The experts were Ray Dorsey, MD, the [...]
Customer Loyalty and Service Insights for the Pharmaceutical Industry
Customer Loyalty and Service Insights for the Pharmaceutical Industry By Dana Deighton “Only nine percent of U.S. consumers believe pharmaceutical and biotechnology companies put patients over profits.” This sentiment, found in the 2016 Harris Poll of Reputation Equity and Risk Across the Health Care Sector, has stayed fairly consistent in Harris polls until recently.1 In this year’s April and May series of surveys around the COVID-19 pandemic, [...]
For Psoriasis Awareness Month: The Psoriasis Support Community on Inspire Talks Treatments
For Psoriasis Awareness Month: The Psoriasis Support Community on Inspire Talks Treatments By Kathleen Hoffman, PhD, MSPH Try to list chronic illnesses that you think have a major effect on the person’s daily quality of life. You can probably think of several, but is psoriasis on the list? It ought to be. One Inspire member described his current symptoms in a post: Standing still in one place [...]
Patients Discuss and Debate the Medical Outcomes from Generic Formulations
Patients Discuss and Debate the Medical Outcomes from Generic Formulations By Jeff Terkowitz When mature products face the introduction of generics, patients are often considering, or asked to consider, switching their medications. At that transition, there is a high need for Real World Data documenting patient experiences. What happens to medical outcomes when patients switch medications? Where does a business get the Real World Evidence (RWE) about [...]
HEOR: Incorporating the Human Costs and Benefits into Drug Value
HEOR: Incorporating the Human Costs and Benefits into Drug Value By Kathleen Hoffman, PhD, MSPH In a 2007 article, “Pinning Down the Money Value of a Person’s Life,” NY Times reporter Alex Berensen wrote, “HOW much is your life worth? How about a year of life? How much is your vision worth? What about being pain-free? Able to walk unassisted? ... Economists are sometimes accused of knowing [...]
The Bladder Cancer Advocacy Network Support Community on Inspire Talks about Treatments
The Bladder Cancer Advocacy Network Support Community on Inspire Talks about Treatments By Kathleen Hoffman, PhD, MSPH If asked to list the most common cancers in the U.S., most people would include breast, lung, skin, and prostate cancers. So you may be surprised to learn that the fourth most common cancer among men in the U.S. is bladder cancer.1 The estimate for 2020 is that new cases [...]
FDA Finalizes First of Four PFDD Industry Guidances
FDA Finalizes First of Four PFDD Industry Guidances By Marina Ness, MA On June 16th, the FDA released the final version of “Patient-Focused Drug Development: Collecting Comprehensive and Representative Input.” This document, referred to as Guidance 1, advises industry on methodologies they can use to collect patient input that will be considered scientifically valid for the drug and device regulatory approval process -- including guidance on using [...]
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 [...]