Redefining Life as a Patient and Caregiver : Experts by Experience 2018 Parenting and caring for a child with a medical condition challenges Erin Moriarty Wade. She writes, “I know that the patient experience begins long before you meet the doctor. I know that sometimes even parking your car can become [...]
Collaborating with Rare Disease Patient Advocacy Organizations By Judy Chandler MPH, CHES The first Rare Disease Day took place on February 29, 2008, chosen because February 29 is a “rare date.” Since then, it has continued to occur on the last day of February. Inspire will participate in this year’s worldwide awareness [...]
Diversity in Clinical Trials: Being Left Out By Marina Shayevich Why do African Americans develop breast cancers with significantly higher basal gene expression? 1 Why do Hispanics develop type II diabetes at an earlier age than other groups? 2 Understanding the functional reasons for disease processes is necessary to develop targeted treatments. Yet [...]
Patient Engagement through Internet Research and Clinical Trials: Annual Survey Results By Hannah Eccard Inspire delves in to new developments and continuing trends among patients and caregiver members through its new publication, Insights from Engaged Patients. Details from this fourth annual survey of 9489 respondents are available to download below but here [...]
The real world online--Understanding and using patient-reported real world evidence from social media By Monica St Claire Next week, I will be presenting at the Patient Registries and Real World Evidence Summit in Miami. The focus of the conference is Real World Evidence (RWE) in drug development, FDA approval and payer reimbursement. [...]
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 [...]
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 Do Patients Wish Their Doctors Knew? For the better part of the 21st century, researchers from academia and the pharmaceutical industry have observed, recorded, and attempted to influence the physician-patient power dynamic. As one such study revealed in 2001, both physicians and patients have “power”; but differences in “in-office priorities” [...]
Find Your SMART: A blueprint for patient engagement The drug development process has historically siloed pharmaceutical companies and patients until the time comes for clinical trials. Drug development is a complex, expensive process that requires a lot of expertise. But patients are experts on their own experience of illness and their insights [...]
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 - [...]
