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 [...]

Apr 2019By |0 Comments

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 [...]

Collaborating with Rare Disease Patient Advocacy Organizations

Collaborating with Rare Disease Patient Advocacy Organizations By Judy Chandler MPH, CHES The first Rare Disease Day took place on February 29, 2008, chosen because February 29 is a “rare date.” Since then, it has continued to occur on the last day of February. Inspire will participate in this year’s worldwide awareness effort to help inform the general public and policy makers about the impact of rare diseases on patients’ lives at the annual Rare Disease Day at National Institutes of Health with a poster and exhibit booth on February 28. Defined as affecting less than 200,000 [...]

Diversity in Clinical Trials: Being Left Out

Diversity in Clinical Trials: Being Left Out By Marina Shayevich Why do African Americans develop breast cancers with significantly higher basal gene expression? 1 Why do Hispanics develop type II diabetes at an earlier age than other groups? 2 Understanding the functional reasons for disease processes is necessary to develop targeted treatments. Yet because clinical research lacks sufficient diversity, reasons for and mechanisms of disease development are not fully understood. Some reasons for minority patient under-representation in clinical trials are known. For example, strict eligibility criteria, like chronic kidney disease,3 hypertension or diabetes exclusions, leave out many groups, [...]

Patient Engagement through Internet Research and Clinical Trials: Annual Survey Results

Patient Engagement through Internet Research and Clinical Trials: Annual Survey Results By Hannah Eccard Inspire delves in to new developments and continuing trends among patients and caregiver members through its new publication, Insights from Engaged Patients. Details from this fourth annual survey of 9489 respondents are available to download below but here are a few highlights to get you started. Using ICD-9/10 to code members’ interests and health communities, we segmented respondents into health condition groups. The five largest condition groups in this survey were Oncology (i.e. all types of cancer and cancer-related issues), Autoimmune (Rheumatoid Arthritis, [...]