"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 [...]
What Members Tell Each Other About Clinical Trials By Kathleen Hoffman, PhD MSPH "Failing to enroll a sufficient number of subjects in a trial is a long-standing problem"1 but understanding the factors impeding enrollment can be difficult. Public posts on social media are an effective resource for understanding how patients feel [...]
Real World Data to Real World Evidence By Kathleen Hoffman, PhD MSPH You’ve started a medication, and you feel “off” in some way. How “off” do you have to feel before you mention it to your doctor or until you or she sends an Adverse Drug Reaction (ADR) report to the [...]
The Kidney Cancer Support Community on Inspire By Kathleen Hoffman, PhD MSPH Of the over 1 million cancers diagnosed each year in the US, around 3 percent are kidney cancers.1 This relatively rare cancer is twice as likely to develop in men as women. Around 73,000 new cases will occur in [...]
What’s the FDA up to on Patient-Focused Drug Development (PFDD) these days? By Kathleen Hoffman, PhD MSPH Part of the FDA’s mandate in implementing the “21st Century Cures Act” is ensuring the incorporation of patient experience data into drug development. They’ve hit the deadline for another Patient Focused Drug Development (PFDD) [...]
Can We Have Your Attention, Please? By Heather Holder and Odin Soevik Internet users have a lot of experience in ignoring online advertising. The term “banner blindness” appeared around 1998 to describe online users’ acquired ability to ignore most banner ads as irrelevant to them. That’s 21 years of practice. Presumably, [...]
Join the Party...Sponsored Content / Native Advertising! By Odin Soevik There are two ways to be invited to a party where someone is selling something. Either your host tells you, up front, that it’s a party where part of the event is sales-related, and hopes you’re interested. Or, there’s the kind [...]
Buzzword Bingo and Sponsored Content / Native Advertising By Odin Soevik “Buzzword bingo” is a game in which everyone in a meeting gets a one-page grid of today’s business buzzwords. Each time a person in the meeting says one of the words, you mark the box with that word in it. [...]
HPV is Not in Scarlet Letters: Cervical Cancer Patients Being Stigmatized By Kathleen Hoffman, PhD, MSPH Imagine being given a diagnosis of cervical cancer. That’s bad enough. Now, imagine that it comes with the assumption you got it by sleeping around. In 1983 and 1984, Dr. Harold zur Hausen isolated Human [...]
