social media

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 [...]

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. [...]

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 [...]

Rethinking patient engagement in clinical trials: Be part of the solution

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 [...]

Video Vignettes: Through Their Own Lens: Neurofibromatosis

Video Vignettes: Through Their Own Lens: Neurofibromatosis Our “Through Your Own Lens” initiative invited members to share their personal stories through short videos. Patients have been describing their disease history, their feelings about their disease and thoughts about Inspire. Living with Neurofibromatosis Neurofibromatosis is a condition affecting the nervous system, causing tumors [...]

Video Vignettes: Through Your Own Lens – Living With Invisible Disease

Video Vignettes: Through Your Own Lens - Living With Invisible Disease Looking "well" is a common challenge among people who live with invisible illnesses and chronic disease.  Some call themselves “spoonies”: people who hear “but you don’t look sick” throughout their lives, while actually managing serious illness.  The term “spoonie” comes from [...]

Video Vignettes: Through Your Own Lens – Dealing With Side Effects

Video Vignettes: Through Your Own Lens - Dealing With Side Effects You wouldn’t think that someone could speak with delight about an experience with diarrhea. Yet when Amy,* a lung cancer patient, speaks about her search for help with “horrific diarrhea” in the video below, she sounds happy. Her relief at finding [...]

Humanizing The Brand Experience: Five Ways to Optimize Your Patient-Centric Strategy with Social Media

Humanizing The Brand Experience: Five Ways to Optimize Your Patient-Centric Strategy with Social Media Today, over 65% of American adults are using social media sites, and adoption from seniors (65 and older) has grown from 0% in 2006 to 35% in 2015. This digital transcendence has had profound implications for healthcare and [...]

Rare Disease and Social Media: Making Connections

Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases.  Now, on social media, they are writing about it, sharing the desperation and the hurt.  And they are finding each other in [...]

Patient Experience Data and the Role of Social Media

Patient Experience Data and the Role of Social Media (Part 1) The 21st Century Cures Act, passed in December 2016, defined patient experience data as data that: “(1) are collected by any persons (including patients, family members and caregivers of patients, patient advocacy organizations, disease research foundations, researchers, and drug manufacturers); [...]