genetic testing

Genetic testing: What patients and caregivers understand and value

Genetic testing: What patients and caregivers understand and value There’s been an explosion of information about genes, genetics and genomics since completion of the Human Genome Project in April 2003. Stories about remissions achieved through pharmacogenomics and immunotherapy and disease risk factors identified through genetic testing fill both online and offline [...]

Using social listening to understand information needs during the patient journey: ovarian cancer

Using social listening to understand information needs during the patient journey: ovarian cancer By Kathleen Hoffman, PhD While patients see physicians as the primary and most trusted information resource, research indicates that patients with cancer also seek information elsewhere. Reasons for investigating further include 1) verification or double checking, 2) clarifying what [...]

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 [...]

In new report, Inspire examines clinical trials, genetic testing

In new report, Inspire examines clinical trials, genetic testing Editor’s note: Last week, Inspire released, “Insights from Engaged Patients: An Analysis of the Third Annual Inspire Survey”. Over the past three years, the Inspire Annual Survey has captured insights of over 30,000 respondents, representing more than seven million data points. In the [...]