treatment decisions

Hacking clinical trials: Two awareness and protocol strategies invented by patients and caregivers that work

Hacking clinical trials: Two awareness and protocol strategies invented by patients and caregivers that work By Kathleen Hoffman, PhD Patients with life-threatening diseases aren’t waiting for someone to make participating in clinical trials easier for them. They are breaking down the barriers themselves. Two of these innovative methods were described at a [...]

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 [...]