“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 [...]

What Members Tell Each Other About Clinical Trials

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 and what they understand about clinical trials. On Inspire, “clinical trials” are a popular topic. Close to 58,000 posts mention clinical trials. A cursory search of Inspire postings show the diversity of opinions and understandings: some member posts provide solid information, some members post incorrect [...]

Real World Data to Real World Evidence

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 FDA through the MedWatch program? On the other hand, how “off” do you have to feel before mentioning it to your peers in an online health community? A study conducted by Inspire and Stanford University found that people mentioned an ADR for a specific drug [...]

The Kidney Cancer Support Community on Inspire

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 the US in 2019, about 44,000 men and 29,000 women.2 Kidney Cancer Association Kidney Cancer Support Community on Inspire Started in 2014, the Kidney Cancer Association Kidney Cancer Support Community on Inspire has grown to approximately 2600 members; 64 percent are female, 36 percent male. [...]

What’s the FDA up to on Patient Focused Drug Development (PFDD) these days?

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) Guidance document, so let’s look at the status. Background The Agency is in the process of issuing four PFDD guidance documents to “address, in a stepwise manner, how stakeholders can collect and submit patient experience data” for medical product development and regulatory decision-making.1 Draft Guidance [...]

Can We Have Your Attention, Please?

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, as new forms of advertising are developed, audiences have only gotten better at recognizing ads, and, if average click-through rates are a measurement, overlooking them. The Role of Personal Relevance Human brains are designed to perform “selective filtering,” attending to what is immediately relevant and [...]

Join the Party…Sponsored Content / Native Advertising!

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 where you thought you were being invited over for dinner but you find out, too late, that your host is selling you life insurance. When the latter happens, you may not know how you feel about your friend. It’s the same with native advertising. Sponsored [...]

Buzzword Bingo and Sponsored Content/Native Advertising

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. The first person to mark off a full line of buzzwords, wins. If you work in pharmaceutical marketing, your bingo card definitely has some form of the word “storytelling” on it, along with a set including authenticity, relationship, brand equity, eWOM, influencers, and the old [...]

HPV is Not in Scarlet Letters: Cervical Cancer Patients Being Stigmatized

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 Papillomavirus (HPV). There are more than 200 types of human papillomavirus (HPV), most of which are common and symptom-free.1 But several variants, HPV-16 and HPV-18 being the first two identified, are associated with cervical cancer. HPV-16 is in 50 percent of cancers and HPV-18 in [...]