While others either mention or lament patient -engagement, -centricity, -centeredness, or whatever is trending this week, Patient Advocates In Research (PAIR) has been taking action for decades! The latest DIA Global Forum article (co-written with Patty Spears) offers insights about some of our work in clinical research, entitled, Beyond Patient Engagement: How Research Patient Advocates Contribute to … Continue reading Come on! Let’s move Patient Engagement into Action
4 new projects that will help lower confusion about Ductal Carcinoma In Situ (DCIS)
I've been asked countless times to write about patients and clinical trials. Guess it's time to share what I've learned, along with other patient advocates, as we work beside researchers in the proverbial trenches. Just so happens that this post coincides with April Fool's Day - hope that's not an omen! Why this series? This is the first in … Continue reading Getting Real about Patients & Clinical Trials
Ever take a bunch of facts and turn them into something readable? For real people? From many dry scientific journals? When sources disagree? Vehemently? That is exactly what UCSF researchers Thea Tlsty, PhD, Philippe Gascard, PhD, and I did. Here is what we learned in order to help make sense out of a major worry for women. … Continue reading 6 Ways to Turn Data into a Good Read
Something horrible happened - a clinical trial failed, causing one unexpected death and seriously injuring 5 people. And instead of dealing with a dysfunctional research system, “experts” are spouting off on their own. The few articles written to date focus on the drug (aka the money), not on what people want to know. My Initial Thoughts ClinicalTrialsArena asked … Continue reading A Clinical Trial Failed Patients
I recently found out I'm not the only one who feels inept about the eBook world. What a relief! The eBook world is exploding, so check it out if you haven't already. According to M LeMont, "Over 70% of Internet users access the Internet via mobile devices instead of a PC" and "Less than 10% … Continue reading But, How Do I Get an eBook?
When it's called "Ductal Carcinoma In Situ" - also known as DCIS, Stage 0 or pre-invasive breast cancer, and other names too. DCIS is confusing. Some call it an early form of breast cancer while others want 'carcinoma' taken out of the name because it is NOT cancer. The debate heated up (again), based on some new … Continue reading When is ‘Carcinoma’ not Cancer?