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 [...]

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, patients’ stories are authentic and genuine “windows into the lived experience,”1 or as linguists would argue, their stories are rich sources of “real world evidence.” Breast cancer patients have been sharing their stories online for many years now. On July 4, 2011, the #BCSM (for [...]

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 [...]

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 on their conditions and on day-to-day life with their disease. A patient outcome—where improvement with treatment is meaningful in daily life—can only be understood in a patient’s own words. Vaidya noted that, “patients ‘chief complaints’ may not be factored explicitly into drug development plans.” 1 [...]

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 understanding patients --their lives, lifestyle, experiences-- and trial protocol design. Recently, Inspire’s research team completed the preliminary analysis of a survey to understand patient and caregiver perceptions and attitudes toward clinical trials. Over 1500 (1644), patient and caregiver members  experiencing either ovarian, prostate or colorectal [...]

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 occurred in social media use in healthcare. The use of social media and mobile apps among patients and caregivers has changed dramatically over the past four years and Inspire’s annual survey data supports this. For example, in 2014, 70 percent of the over 13,000 respondents [...]