Caregiving in the Time of COVID
Caregiving in the Time of COVID By Kathleen Hoffman, PhD, MSPH with contributing writer/Inspire member Peigi Chace On Inspire alone, 41,000+ members have written over 19,000 posts about Coronavirus. An Inspire Coronavirus support group has been formed. Real world voice analysis of caregiver posts on Inspire reveal the desperation caregivers have been experiencing during the pandemic. my husband is on a vent in the hospital. I haven’t [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]
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 [...]