“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 [...]

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Aug 2021By |0 Comments

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 [...]

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Aug 2021By |0 Comments

Bringing Patients and the Life Science Industry Together: Patient Advocacy +

Bringing patients and the life science industry together: Patient Advocacy + By Robert Schultz “Progress is personal,” according to Bob Coughlin, President and CEO of the Massachusetts Biotechnology Council (MassBio) and the father of a graduating high school senior with cystic fibrosis (CF). Coughlin’s keynote opened a unique virtual event called Patient Advocacy +, organized by swissnex Boston in partnership with Inspire. Patient Advocacy + was a perfect example of why Switzerland opened swissnex Boston in 2000 in Cambridge, Massachusetts. swissnex Boston is Switzerland's first hub of science and innovation and, as such, a pioneer in intellectual [...]

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Jun 2020By |1 Comment

Why Limit Awareness Trial Usage Surveys (ATUs) to HCPs? Patients and Caregivers Provide Needed Insights

Why Limit Awareness Trial Usage Surveys (ATUs) to HCPs? Patients and Caregivers Provide Needed Insights By Richard Tsai One online glossary defining ATUs (Awareness, Trial, and Usage studies) described them, in part, as “survey[s] to measure consumer awareness, trial, and product usage for a product category and/or brand...” But in a pharma marketing context, it seems as if the participant in the study is almost always presumed to be the prescriber. More than one source researched for this article was written with that assumption. For example, an article on current updates on how ATUs are implemented [...]

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Jun 2020By |0 Comments

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice By Kathleen Hoffman, PhD, MSPH The most persistent hurdle in running a clinical trial is recruiting and keeping participants. More recently, the FDA added the expectation that the value of released drugs be supported with Real World Evidence (RWE). A recently-conducted multi-center prospective observational study accomplished both by using patients as partners throughout clinical design. The PROP-UP study was a designed to collect real world patient centered data on the harms and benefits of the new, highly effective, direct-acting antiviral [...]

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May 2020By |0 Comments

Real World Voice Allows Patients to be Part of the Cure

Real World Voice Allows Patients to be Part of the Cure By Claire Harter “The patient wants to be a partner in cure, just as with their doctors they want to be a partner in care.” - John Linnell, COPD Patient Advocate, talking about health literacy, eyeforpharma virtual conference, 4/14/2020 Where and how can patients partner with pharma for a cure? Where can pharma go to learn from patients about the patient experience? One resource is Electronic health records (EHRs). As a resource, they provide critical information about patient diagnosis and treatment. But, EHRs reflect the [...]

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Apr 2020By |0 Comments

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 [...]

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Jan 2020By |0 Comments

What Touchpoints Influence Drug Compliance for Chronic Illnesses?

What Touchpoints Influence Drug Compliance for Chronic Illnesses? By Kathleen Hoffman, PhD, MSPH Recent marketing research from Google shows that it takes 50-500 touchpoints to influence a purchase decision. While the study focused on common non-medical purchases (headphones, airline flights, beauty products, and candy), the authors point out an important shift in the concept of marketing touchpoints: Today, people are no longer following a linear path from awareness to consideration to purchase. They are narrowing and broadening their consideration set in unique and unpredictable moments. In fact, the authors of a study titled “Chronic Illness Medication [...]

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Jan 2020By |0 Comments

No “One Size Fits All” Solution to Improve Clinical Trial Participation

No "One Size Fits All"Solution to Improve Clinical Trial Participation By Kathleen Hoffman, PhD, MSPH Clinical trial study designers are trying to find ways to increase participation and reduce dropout. According to three recent studies, the reasons patients give for not participating in clinical trials vary depending on a number of factors including the condition being studied, the gender or age of participants, and even minority status. Accommodating these differing needs in the study design would support enrollment and sustain participation, but it requires asking prospective participants what would lower the barriers for their specific condition [...]

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Jan 2020By |0 Comments

Where Can I Get This ‘Real World Data’ You Speak Of?

Where Can I Get This ‘Real World Data’ You Speak Of? By Robert Gardner How far has the importance of Real World Evidence advanced as part of treatment development? When the attendees of a recent eyeforpharma webinar were asked, “Are you, or will you soon be using RWE for enabling new types of value or outcomes-based assessment within your own firm?” 35 percent responded that they already consider RWE “a universal and necessary standard,” with another 26 percent saying RWE is or will be used as evidence in developing “specialty and high-priced treatments.” A “universal and [...]

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Dec 2019By |0 Comments