I recently had the opportunity to attend the annual meeting of  PCORI — Patient-Centered Outcomes Research Institute.

Three days of presentations and panel discussions all focused on one recurring theme:

Patient voices, preferences, values, experiences, and outcomes matter.

I felt like I was in patient advocate heaven.

Suzannah Fox, former Chief Technology Officer of the U.S. Department of Health and Human Services, led the audience through “The Natural History of a New Idea,” also known as Crazy. Crazy Crazy. Obvious.

1. Outright wacko.
   “This is worthless nonsense.”
2. Odd but unproven.
   “This is an interesting, but perverse, point of view.”
3. True but trivial.
   “This may be correct, but it is quite unimportant.”
4. Obvious.
   “What’s new? This is what we’ve said all along.”

I smiled… thinking about how this related to my personal experiences with DCIS.

In 2010, it was “crazy” to question the aggressive “standard-of-care” treatments for low-risk DCIS.

“Cancer is cancer!” women argued.

“Less is more” — even for low-risk DCIS — was often labeled “controversial” in the media.

But newer research began to tell a different story.

It became obvious that not all DCIS is the same — and maybe not all DCIS needed to be aggressively treated.

“Studies have shown 70-80% of DCIS may never become invasive breast cancer even when DCIS is left untreated.  Many breast cancer doctors and researchers now believe that low-risk DCIS is being over-treated. They also suggest that these women may have the same excellent outcomes with close monitoring, also known as “active surveillance.”

Fast forward to 2016…

PCORI awards $13.4 million in funding for  The Comet Study, the first randomized clinical trial in the U.S. to compare “active surveillance” to surgery for low-risk DCIS.

Some COMET Study Team members

This funding allows researchers, patients, physicians, and advocates to work together towards finding the scientific answers needed about low-risk DCIS.

PRECISION Team, London, 2018

COMET, along with LORIS in the UK and LORD in the Netherlands, is also part of a global research project called PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now).

Researchers are tackling the question…

“When is cancer not really cancer?

The goal is to find out whether bio-markers can accurately and reliably distinguish between women with DCIS who will likely develop breast cancer and should be treated, and those who can safely avoid treatment and life-long side effects.

Thank you PCORI for funding the COMET Study and so many more important research projects that are helping to change the culture of health-care!

(PCORI) is a nonprofit organization authorized by Congress to fund studies that help patients and those who care for them make better-informed healthcare choices.

Check out PCORI’s Research Done Differently