STORMing Cancer: Researching cancer & inflammation

Sept 29, 2022: Yes, it's been too long since I last posted. Here is an update: We now have Plain Language Summaries (listed below for each team) in 3 different 'languages': U.S. English, UK English, and French. Thanks to our French translators: Julie Bérubé et Philippe Gascard! We also have a video - that will … Continue reading STORMing Cancer: Researching cancer & inflammation


Keeping Patient Perspectives at the Forefront of DCIS Research

Thanks to Donna Pinto for a great summary of our activities at the 2017 San Antonio Breast Cancer Symposium (SABCS), and with the 2 amazing studies that we are both a part of: COMET & PRECISION! Let us know if you want more info. Thanks!

DCIS 411

COMET PLTPatient Advocates from across the US and around the world came together to share insights about DCIS at the 2017 San Antonio Breast Cancer Symposium.

The COMET Study Patient Leadership Team presented “Changing the DCIS Conversation: Development of an Alternative Discourse by Patient Advocate Stakeholders in the COMET Study.”

PLT POSTEREllen Jelle Deb DonnaAdvocates from the US, UK and the Netherlands highlighted their role as “partners” on PRECISION — “PREvent ductal Carcinoma In Situ Invasive Overtreatment Now.”

This international initiative was awarded Cancer Research UK’s Grand Challenge. Led by Dr. Jelle Wesseling of the Netherlands Cancer Institute, PRECISION aims to distinguish between lethal cancers that need treating, and non-lethal cancers that don’t.

Help keep patient perspectives at the forefront of DCIS research!  Join the conversation by commenting below or on social media!

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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

Trial results create a WIN for all!

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!

Aggressive Treatments for DCIS — or NOT? New Research Sheds Light

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:

DCIS 411

photo-1440968872456-dec3196b9bee - Copy (2)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

comet_3In 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:

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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