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
So sorry for the silence! I've been working on many topics and issues, and you will hear about them soon. I also forgot to share this guest blog post I did back in March 2017. The Clinical Trials Arena post, Trial Results Create a Win for Patients and Companies, covers the reasons trial summaries need to make … Continue reading Trial results create a WIN for all!
4 new projects that will help lower confusion about Ductal Carcinoma In Situ (DCIS)
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
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
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 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