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 Study from 2016.1  Obtaining input from patients and caregivers early in the protocol development process could prevent many amendments. This is just one reason to consider an Inspire virtual advisory board. Virtual advisory boards provide clients with a long-term opportunity to engage with key patients [...]

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 the “rarest of the rare”- people who have the exceptionally rare condition, primary periodic paralysis or PPP. There are between 4,000 and 5,000 diagnosed individuals in the US. Finding the Rarest of the Rare for Market Research: Patient Journey Mapping Through In-depth Interviews describes how [...]

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 - nearly half the US adult population - lack.2 What is health literacy? Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions,”3  which is a simple way to [...]

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 the process. Joy Aldrich kept her diagnosis of Charcot-Marie-Tooth a secret from everyone (including her physician) for 33 years.1  Dawn Nellor, a patient with pulmonary sarcoidosis, describes one reason for this, “The behavior of past appointments with physicians…have numbed me to their raised eyebrows and [...]