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 [...]

Read More

Feb 2021By |0 Comments

Eosinophils: Friend or Foe? Eosinophilic Disorders

Eosinophils: Friend or Foe? Eosinophilic Disorders By Kathleen Hoffman, PhD, MSPH Eosinophils are amazing, power-packed cells of the innate immune system. Loaded with granules of cytokines, chemokines, RNAses, cationic proteins, growth factors and more, these leukocytes were thought to be the body’s primary tool to destroy parasites. Now, however, eosinophils are being understood as regulators of inflammation and tissue regeneration. They are also involved in maintaining the defensive structure of the epithelium, residing in mucosal tissue that interfaces with the environment. Additionally, they act as antigen presenting cells (APCs), communicating between the innate and adaptive immune systems. [...]

Read More

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 [...]

Read More

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 [...]

Read More

Jan 2021By |0 Comments

What’s one of the top ten mysterious diseases? Sarcoidosis

What’s one of the top ten mysterious diseases? Sarcoidosis By Kathleen Hoffman, PhD, MSPH Rare disease sufferers may be few in number for a particular condition, but they are an army of survivors when they’re together.  Sarcoidosis is one of the 3000 rare diseases represented in Inspire’s community.  With 600,000 Inspire members affected by rare conditions, the over 95,000 making up the Sarcoidosis audience on Inspire or “sarkies,” as they call themselves, are in good company. Dr. Michael Iannuzzi,  the Edward C. Reifenstein Professor and Chair at the State University of New York-Upstate Medical University, calls sarcoidosis [...]

Read More

Jan 2021By |2 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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

Dec 2020By |1 Comment

Living with a Mysterious Illness: Scleroderma

Living with a Mysterious Illness: Scleroderma By Kathleen Hoffman, PhD, MSPH Unless you’re a specialist, you might not recognize a chronic disease that is named for its effect on the skin -- but might not appear there. It’s scleroderma. In fact, the symptoms vary greatly for each person: From 75-90% of patients have GI symptoms with it; it can be visible or invisible; it can come and go or last a lifetime; and can be mild or life threatening. The cause is unknown and it might appear at any age., It affects about 300,000 people in the [...]

Read More

Dec 2020By |0 Comments

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 [...]

Read More

Nov 2020By |0 Comments