How to Work with Patient Advocacy Groups & Patients

It's been awhile since I posted anything - sorry about that. Between excessive travel, new projects with new partners, and unexpected foot surgery, time marched on without me! I actually wrote 2 guest posts that I haven't mentioned, though. Here is the first one: Get Real with Patients and Their Advocacy Groups at Clinical Trials Arena. It summarizes a … Continue reading How to Work with Patient Advocacy Groups & Patients

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Getting Real about Patients & Clinical Trials

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

6 Ways to Turn Data into a Good Read

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

7 Ways to Keep Your Funders Excited

This was originally posted on December 9, 2014 for nFocus Solutions, which provides great data solutions for non-profits, government agencies, and communities. Check them out (after reading this post, of course)! Do you know what funders want most? They want tangible results they can see and understand. They also want to feel like they are part of … Continue reading 7 Ways to Keep Your Funders Excited

Clinical Trial Patient Summaries Win!

Congratulations to the MRCT Center of Brigham and Women's Hospital and Harvard and team for winning the 2015 Award for Excellence in Human Research Protection from the Health Improvement Institute! The winning project recommends ways to write public summaries after a clinical trial is over. Why Is This Important? People join clinical trials (research studies) so researchers … Continue reading Clinical Trial Patient Summaries Win!

But, How Do I Get an eBook?

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?

A Plan for Real Research Improvements

Looks like 1,772 of us posted public comments about medical research informed consents to the NPRM docket! I realize this sounds obtuse, but bear with me through this post - please! So, What's the Big Deal? The final regulation will affect millions of patients, researchers, institutions, and companies. These rules last changed in 1991. You know, before the … Continue reading A Plan for Real Research Improvements