A Surprise Diagnosis: Chronic Kidney Disease

A Surprise Diagnosis: Chronic Kidney Disease By Kathleen Hoffman, PhD, MSPH March is National Kidney Month, when communities across the country work to raise awareness about kidney disease. Not too worried? You might want to check: The CDC estimates that 15% of adults are estimated to have Chronic Kidney Disease (CKD). That’s 37 million people in the US alone. Even worse: Most (9 in 10) adults with CKD  do not know they have it.  You can be unaware even if you’re in serious danger of kidney failure. One in 2 people with very low kidney function who [...]

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Mar 2021By |1 Comment

Trying To Find More Answers About Tuberous Sclerosis Complex

Trying To Find More Answers About Tuberous Sclerosis Complex By Kathleen Hoffman, PhD, MSPH Tuberous Sclerosis Complex (TSC) is a “rare” genetic disease: According to the Tuberous Sclerosis Alliance, Inspire’s community partner, “At least two children born each day will have tuberous sclerosis complex.”1 Classifying a disease that affects a million people worldwide as “rare” doesn’t comfort patients with TSC. Created by mutations in one or two genes, TSC1 and TSC2, its manifestations vary widely depending on the nature of the mutation, which is why it is called “tuberous sclerosis complex.” It’s a complex genetic disorder. It [...]

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Feb 2021By |0 Comments

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 seen him since the ambulance came and drove off. They can’t get him off vent which, by the way, was introduced to break through blockage in the carotid artery to [...]

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Feb 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

Involve Pharma Marketing Early in Drug Development

Involve Pharma Marketing Early in Drug Development By Richard Tsai In 2009, PricewaterhouseCooper published a paper predicting the landscape of pharma marketing in the decade to come titled “Pharma 2020: Marketing the Future - Which Path Will You Take?” What were they expecting then, and how does it compare with today’s remarkable and fluid pharma reality? One of the predictions was, “By 2020, pay-for-performance will be the norm in many countries.”1 In 2009, it was a simple matter; if the patient received a prescription, there would be payment. The authors anticipated that health outcomes would become the [...]

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Apr 2020By |0 Comments

How is COVID-19 Impacting Patients and the Life Science Industry?

How is COVID-19 Impacting Patients and the Life Science Industry? By Jeff Terkowitz As a virtual business, Inspire has a head start in dealing with social distancing and COVID-19. Many of our employees work virtually. Our patient and caregiver members have always communicated virtually and during this time are actively engaged in discussing the impact the Coronavirus and COVID-19 are having on their behaviors, concerns and needs. Proactive as ever, Inspire created a new resource for Coronavirus including a map of where people are discussing their experiences, videos of Inspire members participating in our #keepusallsafe public awareness [...]

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Apr 2020By |0 Comments

Continuing Critical Patient-Centric Research Virtually during COVID19

Continuing Critical Patient-Centric Research Virtually during COVID19 By Richard Tsai The COVID-19 pandemic is forcing all kinds of businesses and research institutions to find ways of working that provide results similar to what we’re used to gaining from human social interaction. For example, being mindful of the time healthcare professionals need to dedicate to the pandemic has resulted in tremendous delays in HCP-based market research programs. Many clinical trial sites have temporarily suspended work that not only impacts existing enrolled patients but also greatly reduces recruitment. How can we continue critical research programs amidst these challenges? As [...]

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Mar 2020By |0 Comments

Caregivers and Treatment Decisions

Caregivers and Treatment Decisions By Kathleen Hoffman, PhD, MSPH Besides patients and doctors, who else influences treatment adherence at the consumer level? Marketing might look to one group that has multiple points of influence: Caregivers. Several studies confirm that caregivers are an important factor in a patient’s decisions, including decisions on medication. One study called "The Role of the Family in Treatment Decision Making by Patients With Cancer,” said, “Family opinions have a significant impact on patients’ treatment decisions and psychological well-being....Family care of patients typically involves monitoring patients’ medications.” Another study entitled, “Patient Centered Care: A [...]

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Mar 2020By |0 Comments

Redefining Life as a Patient and Caregiver : Experts by Experience 2018

Redefining Life as a Patient and Caregiver : Experts by Experience 2018 Parenting and caring for a child with a medical condition challenges Erin Moriarty Wade. She writes, “I know that the patient experience begins long before you meet the doctor. I know that sometimes even parking your car can become a big part of that experience–especially when you have to park at a distance with a cranky toddler in a stroller, and a child hobbling in pain. I understand the fear that patients may feel, and I appreciate the role of the oft-forgotten caregiver.” Early [...]

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Apr 2019By |0 Comments

Motivating change through online patient sharing

Motivating change through online patient sharing By Kathleen Hoffman, PhD MSPH Humans evolved as storytellers. Experiences of the weather, nature, life, and the world have been explained through legends and myths. Sharing stories continues to build and maintain community. As Marie Ennis O’Connor, Irish breast cancer survivor, blogger and marketing consultant states, patients’ stories are authentic and genuine “windows into the lived experience,”1 or as linguists would argue, their stories are rich sources of “real world evidence.” Breast cancer patients have been sharing their stories online for many years now. On July 4, 2011, the #BCSM (for [...]

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Apr 2019By |0 Comments