What to Think About BEFORE You Get COVID-19

Sorry it's been awhile! Right now, let's focus on important info about COVID-19. First, a major topic very few bring up: How do you want to be cared for if you end up in a hospital with COVID-19? Not a comfortable topic, but so very important! When doctors are surveyed, most say they don't want … Continue reading What to Think About BEFORE You Get COVID-19

A Place to Teach Old Drugs New Tricks

Due to popular demand, former blog guests Bruce Bloom, and Clare Thibodeaux from Cures Within Reach have returned with another post. This time, they explain how they bring researchers, older drugs, and new funders together to come up with new solutions for patients. Disclosure: I am a member of their Advisory Board, and think this concept is brilliant! … Continue reading A Place to Teach Old Drugs New Tricks

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

Time to comment on EU clinical trial result summaries

I just finished my public comments to the EU about the "Summary of Clinical Trial Results for Laypersons." You can too if you hurry (public comments end on 8/31/16). Here are the instructions. I would appreciate your support on some of the key points listed below. A bit of background The European Medical Agency (EMA) … Continue reading Time to comment on EU clinical trial result summaries

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

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