Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance

Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance By Kathleen Hoffman, PhD, MSPH “The sickest I've ever been!" wrote a participant in Inspire’s COVID-19 HealthJourney survey about surviving COVID-19. Another went into greater detail when asked to share their COVID-19 story. I’ve had systemic lupus (SLE) and Discoid Lupus for 25 years. I’ve been on Hydroxychloroquine since my diagnosis. [In March] I woke with a strep-like sore throat, high fever, migraine, my body was in horrible pain. I called the doc. After being masked, gloved and gowned I was whisked into an isolated room, handled like [...]

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Mar 2021By |0 Comments

COVID-19 vaccines and vulnerable populations: Over 26K participate in ongoing study

COVID-19 vaccine and vulnerable populations: Over 26K participate in ongoing longitudinal study  By Richard Tsai Crowd-sourcing info for a friend: have any of you who have lupus SLE and/or discoid taken the vaccine? Which one? What were your side effects? Thanks for sharing. — Brittney Cooper (@ProfessorCrunk) March 9, 2021 COVID-19 vaccines have been released. Are people hesitant about getting vaccinated? How are people responding? How do people with comorbidities, like cancer, psoriasis, asthma or sarcoidosis feel about getting vaccinated? If they have received the vaccines, how have they responded? It is now possible to find out [...]

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Mar 2021By |0 Comments

Where Do You Start When Searching for Exceptional Responders?

Where Do You Start When Searching for Exceptional Responders? By Richard Tsai Before 2012, if a cancer clinical trial had only one successful remission amid a field of failures, the drug under trial was thought to be unsuccessful. We weren’t asking a key question: What made it work for that one participant? The one remission was an exceptional responder. Exceptional responders are in every clinical trial, but until whole genome sequencing (WGS) became available, it was impossible to scrutinize them. In 2012, researchers at Memorial Sloan Kettering used WGS to learn what caused the remarkable and durable [...]

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Mar 2021By |0 Comments

Portraits of resilience: How patients and caregivers cope through the COVID pandemic

Portraits of Resilience: How Patients and Caregivers Cope through the COVID Pandemic By Richard Tsai The word “storytelling” invokes a pleasant image of listeners around a campfire, listeners from any era and any culture. It could, however, just as accurately evoke an image of brain chemistry that creates direct experience and even changes behavior: I originally discussed this concept in an earlier post, “Why Storytelling Builds Brands.”1 Research shows that people remember stories better than mere facts and that the brain can store more information and retrieve it more easily when it is in story form.2 Storytelling [...]

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Feb 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

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire By Judy Chandler, MPH, CHES Inspire launched a melanoma patient and caregiver support community in 2014, but was looking for a non-profit partner to contribute melanoma expertise and resources to community members. In 2017, the Melanoma Research Alliance (MRA) started expanding its efforts beyond research to also include patients and caregivers. That’s when the MRA and Inspire joined forces and launched the Melanoma > Exchange Support Community on Inspire. Inspire is a true partner for MRA in our work to better serve [...]

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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

Does Your Marketing Campaign Go Full Circle?

Does Your Marketing Campaign Go Full Circle? By Jeff Terkowitz Imagine being able to learn about your audience, test your messages with that audience, directly reach your target audience and then evaluate the campaign - all in one place. It’s possible. But let’s back up. Advertisers already understand the value of knowing their audience and testing their messages. The power of research-backed health communications is used at the federal level too in outreach campaigns. The “Pink Book” is the primer that the National Cancer Institute (NCI), Centers for Disease Control and Prevention (CDC) and all government agencies [...]

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Dec 2020By |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