Respecting privacy matters By Kathleen Hoffman, PhD, MSPH In May, the HealthcareNOW radio program “Harlow on Healthcare” featured Inspire’s founder and CEO, Brian Loew speaking with David Harlow, host and health care law consultant. In the interview, Loew describes Inspire’s patient and caregiver members as a “rich and largely underutilized sources [...]
Referring patients to clinical trials is personal, study shows By Kathleen Hoffman, PhD MSPH Why is it so hard to get physicians to refer patients to clinical trials? One cynical assumption is that physicians are afraid they’ll lose that patient’s business. Not so, according to a Tufts Center for the Study of [...]
Video Vignettes: Through Their Own Eyes: Rare Autoimmune Liver Diseases By Kathleen Hoffman, PhD, MSPH The liver has been called a forgiving organ because of its capacity to regenerate. However, chronic unrelenting damage over years can overwhelm its regenerative abilities, resulting in permanent scarring. Well-known risk factors-being overweight, alcohol abuse, viral infections [...]
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 [...]
Understanding information needs during the patient journey: ovarian cancer By Kathleen Hoffman, PhD While patients see physicians as the primary and most trusted information resource, research indicates that patients with cancer also seek information elsewhere. Reasons for investigating further include 1) verification or double checking, 2) clarifying what they have learned and [...]
Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s [...]
Rethinking patient engagement in clinical trials: Be part of the solution By Kathleen D. Hoffman, PhD Seated in the waiting room of a large medical center, I overheard the bright eyed, young man behind the reception desk ask a new patient, “Would you like to learn more about participating in our [...]
First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member By Kathleen Hoffman, PhD MSPH On June 4, 2015, Holly Kitchen, a young mom with metastatic breast cancer, published a video that received over 46 million views in one week. Its message? “Metastatic breast cancer has no cure.”1 Exactly three years [...]
Inspire Insights: What You Learn From Caregivers By Kathleen Hoffman, PhD MSPH According to the AARP’s 2015 report, “Valuing the Invaluable,” around 18% of adults in the US provide care as unpaid caregivers to family members. Over half of these caregivers are women. 1, 2 Of Inspire’s 1.3 million members, about one-third [...]
Video Vignettes: Through Their Own Eyes: Ovarian Cancer Members of the Ovarian Cancer Support Community on Inspire often refer to each other as “Teal Sisters*.” It's a term of solidarity and camaraderie as they face their condition together. Their posts reflect and express warmth, concern, understanding and an eagerness to help. Below [...]
