patient centered

Collaborating with Rare Disease Patient Advocacy Organizations

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

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

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 [...]

Video Vignettes: Through Their Own Eyes: Rare Autoimmune Liver Diseases

Video Vignettes: Through Their Own Eyes: Rare Autoimmune Liver Diseases By Kathleen Hoffman, PhD, MSPH The liver has been called a forgiving organ because of its capacity to regenerate. However, chronic unrelenting damage over years can overwhelm its regenerative abilities, resulting in permanent scarring. Well-known risk factors-being overweight, alcohol abuse, viral infections [...]

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 [...]

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 [...]

Find Your SMART: A blueprint for patient engagement

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 [...]

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 [...]