The Life Changing Diagnosis of Inflammatory Bowel Disease By Kathleen Hoffman, PhD MSPH I've had UC for 4 years also. Diagnosed with a colonoscopy after 5 months of diarrhea, losing 1/3rd of my otherwise normal weight and enough blood to require a 2-pint transfusion. Pausing a conversation to use the restroom [...]
Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice By Kathleen Hoffman, PhD, MSPH The most persistent hurdle in running a clinical trial is recruiting and keeping participants. More recently, the FDA added the expectation that the value of released drugs be supported with [...]
Exploring Treatment Options with Others Online: Crohn’s Disease and Ulcerative Colitis By Kathleen Hoffman, PhD MSPH According to the CDC, in 2015, an estimated 1.3 percent of US adults (3 million) reported being diagnosed with irritable bowel diseases (IBD): either Crohn's disease or ulcerative colitis.1 There are 70,000 new cases diagnosed every [...]
Real World Voice Allows Patients to be Part of the Cure By Claire Harter “The patient wants to be a partner in cure, just as with their doctors they want to be a partner in care.” - John Linnell, COPD Patient Advocate, talking about health literacy, eyeforpharma virtual conference, 4/14/2020 Where [...]
Searching For Colorectal Cancer Treatment Answers By Kathleen Hoffman, PhD MSPH Inspire members discuss their colorectal cancer (CRC) treatment options and choices in the Fight Colorectal Cancer Support Group on Inspire because there is a lot to discuss. While it’s the third most common cancer in the United States,1 determining a course [...]
Members Find Support on Available Treatments for Osteoporosis By Kathleen Hoffman, PhD MSPH While the CDC is urging the public and the medical community to delay “all elective and ambulatory provider visits,” Inspire’s partner, the National Osteoporosis Foundation (NOF), is stressing the need for osteoporosis patients to adhere to their medication schedule, [...]
Transforming Fear into Hope: Prostate Cancer Treatment Discussions on Inspire By Kathleen Hoffman, PhD MSPH In October 2009, Us TOO Prostate Cancer partnered with Inspire to support men diagnosed with prostate cancer. Now, the Us TOO International Prostate Cancer Support Community on Inspire has over 23,000 members. Last year, almost 500 new [...]
Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020 By Jeff Terkowitz Lesley Gosden, a patient and patient advocate with Parkinson's disease, gave the patient keynote speech opening “Patients As Partners Europe,” held January 27-28.1 She described her experience in the GDNF study, which involved the surgical implantation of a port [...]
When It Comes to Clinical Trials, Patient Concerns Differ By Kathleen Hoffman, PhD, MSPH In 2019, Inspire researched patients and caregivers feelings about, and understanding of, clinical trials. Over 1500 members (1644) participated: Members with arthritis, colorectal cancer, prostate cancer, psoriasis, ovarian cancer, sarcoidosis and scleroderma. The findings show that these [...]
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, [...]
