"I need to breathe" — Living with Asthma: Patient Experiences, Old Challenges, New Drugs By Kathleen Hoffman, PhD MSPH Earlier this month, the American Lung Association (ALA), Inspire’s partner for the “Living with Asthma” online community, announced that it is looking for patient panelists to participate in a PFDD (Patient-Focused Drug [...]
Out of Nowhere: Kidney Cancer By Kathleen Hoffman, PhD MSPH Of the estimated 1.9 million cancers diagnosed each year in the US, around 4 percent are kidney cancers, the most common are renal cell carcinomas (RCC). Around 76,000 new cases will occur in the US in 2021, 48,0000 in men and [...]
Inspire’s MS Community Overcomes Patient Isolation with Peer-to-Peer Support and Experience By Kathleen Hoffman, PhD, MSPH Over 15,000 members of Inspire have interest in, searched for, or have posted about multiple sclerosis (MS). Members have written over 4000 posts and more than 2000 searches have been conducted on MS. Pharmaceutical marketers [...]
Doing Better and Feeling Worse: Patients with Long-term Conditions Describe Drug Side Effects By Kathleen Hoffman, PhD, MSPH We live in fortunate times; people are now described as “living with” conditions. As an article in BioMed Central Health Services Research put it: Where previous generations experienced episodes of infectious and acute [...]
Getting the Real Story from Patients By Kathleen Hoffman, PhD, MSPH Humans evolved in a storytelling milieu where stories taught and explained the world around us. Our brains carry this legacy, research shows that the brain can store more information and retrieve it more easily when it is in story form. [...]
Getting the Most from Online Surveys By Kathleen Hoffman, PhD, MSPH Do you wonder about online surveys? Are they reliable? Is there bias? A recent article by the Pew Research Center For Weighting Online Opt-In Samples, What Matters Most? 1provides guidance to allay those concerns. Pew experimented with different procedures for [...]
Getting the Most from Clinical Trial Protocol Feasibility Studies By Monica St Claire Webinar provides expert tips for getting real feasibility data, optimizing trial design When the drug development process is at the point of moving to clinical trial, the next step is conducting a feasibility study. Stakeholders are all looking [...]
Do You Really Know How Patients Talk About Their Condition? By Kathleen Hoffman, PhD MSPH There are classic examples of advertising messages that ended up offending the target customer, but the Utah Department of Transportation provided the most recent. The Utah DOT’s lighthearted attempt to adopt a specific culture’s way of [...]
Do Patients Care About What Your Drug Does? By Sara Ray, MA Be sure the trial outcomes echo the patient voice, article says In most randomized pharmaceutical clinical trials, researchers are looking for a statistically significant performance difference between the two courses of therapy. But which is more important to the [...]
Clinical Trials and PROs: What Patients with Rare Diseases Say By Kathleen Hoffman, PhD MSPH Challenges to developing clinical trials for rare diseases begin with their rarity – each condition affects fewer than 200,000 Americans. Approximately seventy-five percent of those affected by rare diseases are children. It is estimated that 80 [...]
