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

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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

Esserman & Hwang: TIME’s Top 100 — (And My Top 10!)

Donna Pinto wrote this great post after our meeting last week with other patient advocates, researchers and clinical trial staff to discuss the new PCORI DCIS COMET study that is in development. Thanks to Shelley Hwang, Ann Partridge, Alastair Thompson, and Jennifer Gierisch for including us in the Study Leadership Team!

More DCIS info here.

DCIS 411

Highlights-Esserman-Hwang-TIME100-Blog-270x85What a major milestone this is!

Laura Esserman and Shelley Hwang — named to the 2016TIME 100 Most Influential People in the World!

Why are These Doctors in My Top 10?

From the day I received a DCIS diagnosis and I was told of the very drastic and aggressive treatments, I began to investigate what intuitively felt seriously wrong. I was scared, confused and overwhelmed, but thankfully I soon discovered two breast surgeons leading a “controversial” call for change and discussing the problem of “over-treatment” of DCIS.

Laura Esserman and  Shelley Hwang became my heroes.  They were both boldly taking a stance — challenging the medical status quo when it came to DCIS and calling for radical change. I have been following and promoting their important messages for over six years.

Up until recently the mainstream media didn’t pay much attention to them. Celebrities with DCIS choosing double mastectomies…

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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

Make Clinical Trials Better for Patients

There are many reasons why clinical trials don't work well. A major one is not making them useful or interesting to patients. I had high hopes when I heard about the recent clinical trial protocol (plan) template from the U.S. Food & Drug Administration (FDA) and the National Institutes of Health (NIH) Joint Leadership Council (JLC). Unfortunately, it looks like they … Continue reading Make Clinical Trials Better for Patients

Patients ARE the (end)Point of Clinical Trials

Back in February, I spoke at the 2016 Arena International Outsourcing Clinical Trials West Coast Conference on "Patient Centricity" - a topic they gave me, along with some rather ambiguous objectives. I changed it to "Patients ARE the Endpoint" because it is time to get real about why the clinical trial industry exists in the first place. Yu … Continue reading Patients ARE the (end)Point of Clinical Trials

Oops! Don’t Buy Chocolate Milk for Concussions

No, really. This is a real thing, created by money. Oops, I meant to say, created by researchers and institutions with MAJOR conflicts of interest. Why post it? Well, while this is the most blatant example we've seen in a long time, it happens every day, even to well-meaning researchers. FACT: research is a money game. … Continue reading Oops! Don’t Buy Chocolate Milk for Concussions