Customer Loyalty and Service Insights for the Pharmaceutical Industry

Customer Loyalty and Service Insights for the Pharmaceutical Industry By Dana Deighton “Only nine percent of U.S. consumers believe pharmaceutical and biotechnology companies put patients over profits.” This sentiment, found in the 2016 Harris Poll of Reputation Equity and Risk Across the Health Care Sector, has stayed fairly consistent in Harris polls until recently.1 In this year’s April and May series of surveys around the COVID-19 pandemic, Harris asked the question, “How has your view of [the Pharmaceutical Industry] changed since the start of the coronavirus pandemic?” In both the polls, 40% of respondents had a more [...]

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Aug 2020By |0 Comments

Collaborating with Rare Disease Patient Advocacy Organizations

Collaborating with Rare Disease Patient Advocacy Organizations By Judy Chandler MPH, CHES The first Rare Disease Day took place on February 29, 2008, chosen because February 29 is a “rare date.” Since then, it has continued to occur on the last day of February. Inspire will participate in this year’s worldwide awareness effort to help inform the general public and policy makers about the impact of rare diseases on patients’ lives at the annual Rare Disease Day at National Institutes of Health with a poster and exhibit booth on February 28. Defined as affecting less than 200,000 [...]

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Feb 2019By |0 Comments

Diversity in Clinical Trials: Being Left Out

Diversity in Clinical Trials: Being Left Out By Marina Shayevich Why do African Americans develop breast cancers with significantly higher basal gene expression? 1 Why do Hispanics develop type II diabetes at an earlier age than other groups? 2 Understanding the functional reasons for disease processes is necessary to develop targeted treatments. Yet because clinical research lacks sufficient diversity, reasons for and mechanisms of disease development are not fully understood. Some reasons for minority patient under-representation in clinical trials are known. For example, strict eligibility criteria, like chronic kidney disease,3 hypertension or diabetes exclusions, leave out many groups, [...]

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Feb 2019By |0 Comments

On being a medical hero in the era of social media: Discussing clinical trial participation online

On being a medical hero in the era of social media: Discussing clinical trial participation online By Kathleen Hoffman, PhD “Garrett’s Hero Run” is not the name of a New York Times Bestseller or an up-and-coming blockbuster movie - though it could be. At the moment, it’s the name of a series of races held every year in a small town in Tennessee. A fundraiser name that is poignantly metaphorical. Everyone comes dressed as their favorite superhero and they run the races. But the name is also emblematic of urgency because this is a race against a [...]

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Nov 2018By |0 Comments

Over Two-Thirds of Inspire’s Membership Want Clinical Trial Information

Over Two-Thirds of Inspire’s Membership Want Clinical Trial Information By Richard Tsai Recently a member of a rare disease community on Inspire asked fellow members, “What should I know about clinical trials? Are they worth it? Any information would be helpful. Thank you.” Among the replies they received: “Unfortunately, we’ve not had many opportunities to participate in [rare disease] clinical trials. In my opinion, if a pharmaceutical company, medical device developer, etc. has gone through the required steps to get to human trials for [rare disease]--I’d absolutely want to help them by participating!” In another rare [...]

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Sep 2018By |0 Comments

Everything Your Organization Needs in One Place: Inspire Products

Everything Your Organization Needs in One Place: Inspire Products Inspire has four product lines available to address the needs of the life science industry and other healthcare organizations, like hospitals and clinics. Thousands of patients within Inspire’s communities are interested in and actively looking for opportunities to participate in clinical trials. They are members with rare diseases as well as more common conditions. They are asking each other questions like: “How do I know if a clinical trial is right for me? How do I know if I am right for a [...]

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Apr 2018By |0 Comments

The Case for Online Consumer Recruiting

The Case for Online Consumer Recruiting Over the past few years, recruiting for consumer healthcare market research has undergone a drastic change. In the past, pharma clients would take their business questions to their research vendors, who could easily leverage panel companies to fill the desired project samples and ultimately deliver successful insights back to their clients. As the industry has shifted its focus to oncologic conditions, rare diseases, orphan drugs and otherwise underserved populations, vendors are struggling to access these small, unique patient populations, resulting in partial, or even total, failures in fielding. I recently addressed [...]

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Jan 2018By |0 Comments

Virtual Patient Engagement: Inspire and the NIH Clinical Center

Virtual Patient Engagement:  Inspire and the NIH Clinical Center Engagement with patients and caregivers is at the heart of Inspire’s community of cancer, chronic, and rare disease support groups.  While there are many ways Inspire can help the industry engage with a targeted patient population, virtual patient engagement  and authoritative expert content are central to that engagement.  For example, we recently conducted five webinars and started a new discussion post series called “Ask the Expert.” During these webinars and through the question-answer format of the “Ask the Expert” series, Inspire educates and engages members, [...]

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Jan 2018By |0 Comments

Patient Engagement Leadership Series Part 2: Designing from the Patient Perspective

Patient Engagement Leadership Series Part 2: Designing from the Patient Perspective The patient perspective is based in the lived experience of illness.  Entering into patient-centered or patient informed medication development means understanding that this worldview cannot be provided independently by researchers or clinicians.1 At Sanofi, patient perspectives have been integrated into clinical trials for over seven years and for more than five years in research, according to Victoria DiBiaso, ‎Global Head Clinical Operations Strategy & Collaboration and her colleagues (Amy Ba, Patricia Roselle and Anthony Yanni).  “It’s been a truly transformative approach and has helped us make [...]

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Nov 2017By |0 Comments

Diversity Initiatives? Are They Worth It?

Diversity Initiatives? Are They Worth It? When I asked audience members at a panel discussion during the inaugural Clinical Leader Forum, held in Philadelphia on May 10-11, 2017, three questions about diversity in clinical trials, I got some surprising answers. The questions were: How many attendees come from organizations that value diversity? How many come from organizations that prioritize diversity? How many attendees acknowledge their own personal biases that may impact their ability to effectively address diversification? Although many in the audience came from organizations that value diversity, there were fewer that came from organizations that are [...]

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Oct 2017By |0 Comments