“I need to breathe” — Living with Asthma: Patient Experiences, Old Challenges, New Drugs

"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 Development) meeting on Pediatric Asthma, to be held virtually on 9/20/2021. “The meeting will consist of an overview of pediatric asthma, an explanation of the Food and Drug Administration’s PFDD meeting process, and two panel sessions,” explained Annette Eyer, the ALA’s National Assistant Vice President [...]

Out of Nowhere: Kidney Cancer

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 27,000 in women. Kidney cancer can occur at any age, but is most likely to be diagnosed between the ages of 55 - 75.1,2,3 Out of the Blue Patients and caregivers describe sudden and unexpected diagnoses of kidney cancer: My husband was just newly diagnosed [...]

Inspire’s MS Community Overcomes Patient Isolation with Peer-to-Peer Support and Experience

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 wonder if patients discuss medications with each other online. The answer is a definitive yes. Patients also discuss what they learned online about treatments with their health care provider. It is not unusual for members to reach out after just being diagnosed. “I was just [...]

Doing Better and Feeling Worse: Patients with Long-term Conditions Describe Treatment Side Effects

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 disease that were often rapidly lethal because there were few effective treatments,... major changes in the epidemiological and demographic landscape have led to increasing numbers of people with chronic or long term conditions such as diabetes and asthma; living with and surviving potentially life-limiting conditions, [...]

Getting the Real Story from Patients

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. Narrative is easier to understand, is more engaging, and is an effective tool to communicate science to lay individuals.1,2 Personal narratives make science relatable. But mistakes made in the process of capturing a patient narrative can be cumulative. When writing native advertising (sponsored content), copy [...]

Getting the Most from Online Surveys

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 weighting results from surveys with online opt-in samples to discover which techniques best reduced bias on estimates. They compared online results with the results given for 24 benchmark questions drawn from “high-quality federal surveys,” public surveys that were conducted using more traditional methods. This was [...]

Getting the Most from Clinical Trial Protocol Feasibility Studies

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 to hit the jackpot: figuring out the best place to conduct the clinical study, and identifying the design factors that result in maximum patient retention. Recently, the topic of the WCG Institute’s podcast “Stump the Experts” was feasibility. It featured Diane Carozza and Danya Kaye, [...]

Do You Really Know How Patients Talk About Their Condition?

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 speaking was predictably ridiculed when “Hey Teens, Buckling Up is Totes Yeet Yo” (meaning “the use of seatbelts is excellent”) appeared on the state’s electronic highway signs.1 honestly pic.twitter.com/axXJwjbJrH — Nico Di Angelo Fan Blog (@Laney_Brynn) October 23, 2019 The story is funny, but illustrates [...]

Do Patients Care About What Your Drug Does?

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 patient: Statistically significant improvement of a variable, or clinically significant improvement? “The operation was a success, but the patient died” is a succinct example of a misplaced sense of priorities. The patient was probably hoping for a better result than academic satisfaction. Here’s another example. [...]

Clinical Trials and PROs: What Patients with Rare Diseases Say

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 percent of rare diseases are caused by genetic changes. Many rare diseases are progressive and debilitating. One third of the children affected by these conditions do not reach 5 years of age.1 Getting to a rare disease diagnosis can take years. In a way, it [...]