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 March 18 Clinical Trials Transformation Initiative (CITI)-FDA event, “Enhancing the incorporation of the patient perspective in clinical trials.”1 Breaking barriers to clinical trial awareness In 2012, Tom Marsilje and his team from Novartis presented a cancer drug he had co-invented at the annual American Society [...]

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 trial information. Opportunity for research collaborations As early as 2005, Inspire member, Katherine K. Leon searched for other people with Spontaneous Coronary Artery Dissection (SCAD). Slowly she found members in Inspire’s WomenHeart community. Motivated by a lack of information explaining why her coronary artery dissected, [...]

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 credit being alive because of that -- it makes you realize that this is not just a matter of 1.6 million people -- but a matter of a ton of individual lives that are affected by what you created.”1 On April 3, Loew shared this [...]

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 Drug Development survey.1 Doctors are confident about and familiar with the clinical trial process. The survey of over 750 physicians found a high degree of comfort with clinical trials; almost 90 percent said they were comfortable providing and discussing clinical trial opportunities with patients. Yet [...]