Come on! Let’s move Patient Engagement into Action

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

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Patient Thoughts on Medical Tests for Research

Here is a guest post I wrote earlier this year for METAvivor called "How Do People Feel about Bone Marrow Exams?" It was based on a study with Bonnie King from Stanford. While this may be one of the more gruesome-sounding medical procedures that some patients go through, it is not necessarily unique.  Too often, researchers think about all … Continue reading Patient Thoughts on Medical Tests for Research

Patients Want Their Data Shared

Patients also want to be: Respected for their contributions to science and medical advances. Those contributions include samples from their bodies (biospecimens), information (data), experiences (input), and sometimes their very lives. Protected from harm and misuse of sensitive data about themselves, their family, and/or their culture or ethnicity. As long as we are respected and protected, … Continue reading Patients Want Their Data Shared

How to Solve Diseases with Existing Drugs

My blog guests this week are Amy Conn, Bruce Bloom, and Clare Thibodeaux from Cures Within Reach. Disclosure: I am a member of their Advisory Board, and think that testing older drugs for rare diseases is brilliant! The power of repurposing What if the latest treatment for cancer, diabetes or thousands of other unsolved diseases … Continue reading How to Solve Diseases with Existing Drugs

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