life science industry

Why peer-to-peer online patient communities are important to patients, caregivers and pharma

Why peer-to-peer online patient communities are important to patients, caregivers and pharma By Kathleen Hoffman, PhD What do patients and caregivers say about online patient communities? Inspire posts, podcasts, and patient advocates concur on the powerful and varied benefits, especially in research collaborations and as a trusted source of treatment and clinical [...]

1.6 Million People Accelerate Medical Progress

1.6 Million People Accelerate Medical Progress When Brian Loew founded Inspire in 2005, he never dreamed of its impact on members, on himself and on the people who worked with him. “When someone tells a story about how, by connecting with others, they learned that a certain treatment was possible. And they [...]

Motivating change through online patient sharing

Motivating change through online patient sharing By Kathleen Hoffman, PhD MSPH Humans evolved as storytellers. Experiences of the weather, nature, life, and the world have been explained through legends and myths. Sharing stories continues to build and maintain community. As Marie Ennis O’Connor, Irish breast cancer survivor, blogger and marketing consultant states, [...]

Referring patients to clinical trials is personal, study shows

Referring patients to clinical trials is personal, study shows By Kathleen Hoffman, PhD MSPH Why is it so hard to get physicians to refer patients to clinical trials?  One cynical assumption is that physicians are afraid they’ll lose that patient’s business.  Not so, according to a Tufts Center for the Study of [...]

Looking for Guidance? FDA and PFDD at “Patients as Partners” 2019

Looking for Guidance? FDA and PFDD at "Patients as Partners" 2019 By Hannah Eccard Pujita Vaidya, Senior Advisor, Patient Focused Drug Development (PFDD) program at the Center for Drug Development and Research (CDER) at the FDA, told an audience at the Patients as Partners Conference last week that patients are the experts [...]

Patient and caregiver perceptions of clinical trials: Preliminary findings

Patient and caregiver perceptions of clinical trials: Preliminary findings By Kathleen Hoffman, PhD, MSPH Many of you have been in Philadelphia for the “Patients as Partners Conference.” Yesterday, Hannah Eccard, Research manager at Inspire, participated in a panel discussion titled, “Mapping Out the Patient Decision Journey.” The panel discussed the link between [...]

A Look Across Inspire’s Annual Surveys

A Look Across Inspire’s Annual Surveys By Hannah Eccard Over the past four years, Inspire has conducted an annual survey of its members. Participation has been high, with an average of 10,000 members participating each year. This large pool of data over time provides a unique glimpse at the changes that have [...]

Using Quantitative and Qualitative Research to Enhance Patient Focused Drug Development

Using Quantitative and Qualitative Research to Enhance Patient Focused Drug Development By Hannah Eccard FDA’s focus of incorporating the patient voice into the drug development process requires the life science industry to engage in new research strategies. Based on what we're seeing so far from the FDA, it appears that the agency [...]

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 [...]