Patient Insights

Social Listening to Understand the Unmet Needs of Patients

Social Listening to Understand the Unmet Needs of Patients By Marina Shayevich and Sara Ray Across healthcare, patients lament the imperfection of pharmaceutical treatment. Although grateful to have life saving and life improving medications, patients are often met with frustration at the limitations of their medications. Nowhere is that more evident than [...]

A dazzle of zebras: Ehlers-Danlos Syndromes

A dazzle of zebras: Ehlers-Danlos Syndromes By Hannah Eccard On their website, The Ehlers-Danlos Society explains why people with Ehlers-Danlos Syndromes (EDS) call themselves zebras. “Medical students have been taught for decades that, ‘When you hear hoofbeats behind you, don’t expect to see a zebra.’ In other words, look for the more [...]

On being a medical hero in the era of social media: Discussing clinical trial participation online

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 [...]

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration By Sara Ray What happened when we compared research strategies used to obtain patient insights? We discovered that using multiple strategies is key to gaining usable understandings. In a recent collaboration between Inspire and the FDA, we compared and contrasted [...]

Can social media help uncover insights about the patient journey?

Can social media help uncover insights about the patient journey? By Monica St Claire Does patients’ social media content truly reflect the real world experience of patients in general? Can it uncover insights about the patient journey? This question tends to come up when someone is new to this type of research. [...]

Using social listening to understand information needs during the patient journey: ovarian cancer

Using social listening to understand 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 [...]

Warring Parties: Voices of Patients in Pain Vs. “Opioid Crisis”

Warring Parties: Voices of Patients in Pain Vs. “Opioid Crisis” By Sara Ray So many of us have pain management issues. We are fighting the doctors and the state laws and the insurance companies. The "opiod [sic] crisis" is an illegal drug problem; it is not a prescription problem for chronic pain [...]

“Learn something from every patient” – Dr. James Allison, Nobel Prize Winner

"Learn something from every patient" By Kathleen D. Hoffman, PhD “I’m an exceptionally lucky guy,” the newest Nobel Laureate in Physiology or Medicine said in a recent interview.1 Dr. James P Allison, Executive Director of the Immunotherapy Platform at MD Anderson Cancer Center, was “just trying to understand the immune system” 2--and [...]

Listen to People Impacted by Rare Disease

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 [...]

Brain Tumors-What patients and their caregivers need-An Inspire Insights: Engage Case Study

Brain Tumors - What patients and caregivers need - An Inspire Insights: Engage Case Study By Monica St. Claire Almost 80,000 adults will be diagnosed with brain or spinal cord tumors in the US this year.1 Seven hundred thousand are living with brain tumors in the US today.1 Although extensive media coverage [...]