Is There Any Way Left To Reach Patients? By Hillary Kuhl As patients rely less on physicians as their ultimate information resource, their treatment decision-making has increased in complexity. Inspire’s most recent Annual Survey found almost a quarter of patients making treatment decisions alone, nearly 70 percent making treatment decisions in [...]
Getting Told You're Making It All Up By Kathleen Hoffman, PhD, MSPH Imagine going to see a doctor when you’re exhausted and enduring multiple kinds of pain, and they recommend a “psych” evaluation. When they “can’t find anything,” the medical professional you looked to for help decides you must be making [...]
Prostate Cancer: "A Couple's Disease" By Kathleen Hoffman, PhD, MSPH Prostate cancer impacts not just the physical health of the individual but also their emotional and social health. A study of patients and their partners compared satisfaction with treatment, worry about cancer, and the consequences of treatment on their relationship. Twenty-five [...]
Engaging Emails Meet the Mark: Fostering Relationships By Linnea Madsen, Odin Soevik, Zeba Khan Inspire utilizes several strategies to engage with our members; one method is our Activity Summary emails. With the Activity Summary, we feature all new discussion posts, replies and reactions -- the activity – that occurs in all of [...]
How Does Pharma Learn to Speak Patient? The "Patient Voice" By Sara Ray, MA We have all, at one time or another, been patients. True or false? If you answer true, it is likely that you are a person who has experienced only acute illnesses, meaning you get sick, feel lousy, [...]
Researching Treatment Options in Online Communities Impacts Decision-Making By Kathleen Hoffman, PhD, MSPH Inspire members don’t just give each other encouragement – they often educate each other through their posts, and take new information to their own doctors. Some members have even found specialists in their conditions and chosen doctors and [...]
Respecting privacy matters By Kathleen Hoffman, PhD, MSPH In May, the HealthcareNOW radio program “Harlow on Healthcare” featured Inspire’s founder and CEO, Brian Loew speaking with David Harlow, host and health care law consultant. In the interview, Loew describes Inspire’s patient and caregiver members as a “rich and largely underutilized sources [...]
Genetic testing: What patients and caregivers understand and value By Richard Tsai There’s been an explosion of information about genes, genetics and genomics since completion of the Human Genome Project in April 2003. Stories about remissions achieved through pharmacogenomics and immunotherapy and disease risk factors identified through genetic testing fill both [...]
Are You Listening to Patients? Patient Preferences and Clinical Trial Design By Kathleen Hoffman, PhD, MSPH Last fall, over 1500 Inspire members living with sarcoidosis, scleroderma, ovarian cancer, prostate cancer, colorectal cancer, arthritis and psoriasis, completed a survey on exploring patient preferences and insights on clinical trials. Our recent webinar, "A Hopeful [...]
The Patient Is Speaking: 5 Benefits of Patient Focused Drug Development Sponsors and CROs Need to Know By Sara Ray, MA Since the 2012 FDASIA reauthorization of the Prescription Drug User Fee Act (PDUFA) and the 21st Century Cures Act ‐‐ Directing and Enabling Patient Focused Drug Development in 2016, integrating the [...]
