“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

How Clinical Trial Diversity Saved a Life

How Clinical Trial Diversity Saved a Life By Kathleen Hoffman, PhD, MSPH “My pastor warned me not to participate in a clinical trial,” Karen Barrios said. Going against his advice, Ms. Barrios joined a clinical trial that she believes saved her life.1 Ms. Barrios shared her story as a panelist during the webinar, “Enhancing Engagement of Communities of Color in Covid-19 Research,” held on January 11 by the Center for Community Health Education Research and Service in Boston. The purpose of this webinar series is to address challenges facing ethnic minorities in accessing healthcare and participating in [...]

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Jan 2021By |0 Comments

What’s Pharma’s Key to Success in 2021?

What's Pharma's Key to Success in 2021? By Kathleen Hoffman, PhD, MSPH What commercial and clinical trends can we expect to shape pharma and biotech as the pandemic continues into 2021? What can your company do to make 2021 a better year? In August, Deloitte surveyed 60 marketing leaders of biopharma companies and published the findings. Fully 80% of respondents expected changes in “consumer attitudes, behaviors, and spending” to have the biggest impact on their company over the coming year.1,2 This supports Deloitte’s 2019 report anticipating a “consumer-centered future of health,” including the consumer’s increased willingness to [...]

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Jan 2021By |0 Comments

Top 5 Ways Online Patient Communities Can Reduce the Cost of Clinical Trials

Top 5 Ways Online Patient Communities Can Reduce the Cost of Clinical Trials By Jeff Terkowitz Trying to rein in clinical trial costs? You’re not alone. A JAMA research study of 138 trials for novel therapeutics found that clinical trial costs ranged from less than $5 million to $346.8 million, with a cluster of trials coming in between $12-33 million -- and that was for trials in 2015-2016.1 Let’s agree on two things: It hasn’t gotten any cheaper, and finding qualified participants is still an issue. Here are five ways online patient communities can reduce the costs [...]

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Dec 2020By |1 Comment

How Do You Elevate Your Patient Insights Strategy?

How Do You Elevate Your Patient Insights Strategy? By Kathleen Hoffman, PhD MSPH You know what you want to say about your product, but are you still looking for the right way to say it? Successful DTC advertising relies on finding language that resonates with target patients. A recent study demonstrated just how profoundly a choice of words affects patient treatment decisions. A survey cited in the JAMA in March showed that 400 ductal carcinoma in situ (DCIS) patients chose different theoretical treatments based on descriptions alone. When DCIS is presented as “abnormal cells,” 69% of the [...]

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Nov 2020By |0 Comments

Recruiting Rare and Oncological Patients? Top Pharma Turns to Inspire

Recruiting Rare and Oncological Patients? Top Pharma Turns to Inspire By Jeff Terkowitz Did you know that 80 percent of Inspire’s members agreed to receive information from Inspire about clinical trials? That’s about 1.6 million members with conditions in oncology, rare diseases, autoimmune disorders and chronic conditions who want to know if and when trials affecting their condition might be recruiting. Pfizer needed to find rare patients with genetic resilience to lung cancer. On Sept 23, the Breakthrough Staff at Pfizer wrote, Normally, discovering a small cohort or one or two families who meet such criteria might [...]

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Nov 2020By |0 Comments

Launching a New Drug During a Pandemic? Successful Launches Included a Rapid Pivot to Social Media

Launching a New Drug During a Pandemic? Successful Launches Included a Rapid Pivot to Social Media By Paul Nash How has the pandemic affected pharmaceutical product launches? Experts say that social media and research have been the key factors for this year’s successful launches. In a webcast on the PharmaVoice Webcast Network, “The State of Product Launch During and Post COVID-19,” speakers Maya Desai, Director at Guidehouse; Lead Launch COE, Eduardo Schur, Partner and life sciences global practice lead, Guidehouse; and Justin Zamirowski, Chief Commercial Officer, Better Therapeutics, described key results from their studies into recent pharmaceutical [...]

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Oct 2020By |0 Comments

How Has COVID-19 Impacted Patients with Rare Conditions?

How Has COVID-19 Impacted Patients with Rare Conditions? By Judy Chandler Over 600,000 Inspire members are affected by rare conditions. As a vital partner to 40 rare disease non-profit advocacy organizations, Inspire’s rare disease patient and caregiver members represent over 3,000 rare conditions. Serving as a common point across these diverse conditions, Inspire was uniquely positioned to learn how rare disease communities were being affected by COVID-19.   First, we noticed a surge of COVID-19 posts across all of Inspire through the month of March. Inspire’s research team began by reviewing some of these member communications to identify [...]

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Oct 2020By |0 Comments

Patients Are The Best Resource For Defining Study Endpoints

Patients Are The Best Resource For Defining Study Endpoints By Robert Gardner In September, the World Orphan Drug Congress USA Fall Webinar series opened with a program called: “Understanding the Novel Challenges in Rare Disease Development: Perspectives From Experts.” They took an audience poll, asking attendees to identify their “biggest challenge in rare disease studies” from five choices, including competition for patients; lack of understanding of disease progression; development of appropriate endpoints; lack of data; and global regulatory pathways. Almost half the respondents -- 46% -- chose “development of appropriate endpoints” as the biggest challenge in rare [...]

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Oct 2020By |0 Comments