research

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 [...]

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. [...]

Implementing patient centricity?

Implementing patient centricity? By Monica St. Claire Over 1,000 employees from bio-pharmaceutical, medical device and associated supplier companies responded to the Aurora Project’s recent Patient-Centric Benchmarks Survey. Of those respondents, 91% said patient centricity is important, a 6% increase from 2016. But only 30% believe the industry can make it a [...]

What is a Virtual Advisory Board product?

What is a Virtual Advisory Board product? By Monica St. Claire Almost 60 percent of all clinical trial protocols have at least one amendment. Amendments lower the numbers of recruited patients as well as increase the cost of clinical trials according to Tufts Center for the Study of Drug Development Impact [...]

From Research To Action for Patients

From Research To Action for Patients It is exciting to see the results of research providing strong, positive benefits to patients. That was the take-away from a joint presentation made by Inspire and Strongbridge BioPharma at the Pharmaceutical Market Research Conference (PMRC) this month. Last fall, Strongbridge BioPharma engaged Inspire to find [...]

Patient-Centricity, Health Literacy and Pharma

Patient-Centricity, Health Literacy and Pharma According to an IBM white paper, “Patient-centric models put the needs of the patient first, but require greater patient responsibility and accountability.”1 This is a challenge.  Making the best possible decisions about one’s health requires a set of skills and resources that about 90 million people - [...]

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 [...]