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!
Another good post about some of the new DCIS research that should give us better answers! If you want more information about DCIS, please join us at the SHARE DCIS webinar on 3/22/17 at noon Eastern: bit.ly/2hRYj8H
Where are the studies of women (like me) who have taken a less aggressive path for “low-risk” DCIS?
Until now — they didn’t exist.
Thanks to $13.4 million in funding from the Patient-Centered Outcomes Research Institute (PCORI), a long over-due clinical trial for DCIS has officially launched.
It’s called The COMET Study.
The goal is to learn if women with low-risk DCIS can avoid aggressive treatments and their physical and/or emotional side effects.
COMET stands for Comparison of Operative to Monitoring and Endocrine Therapy. It is a randomized prospective study that will enroll 1200 women at 100 cancer centers throughout the US.
My Role as a Patient Advocate
In 2016, I was invited to be one of four patient advocates on The COMET Study team.
We have enjoyed the opportunity to keep patient perspectives at the forefront of the study as well as this new website: www.dcisoptions.org
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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
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