Wednesday, June 29, 2016

Every Patient #CanServe - Join @CancerBase

I am so excited I can barely contain myself.

Today is a BIG day for cancer patients around the world. ALL cancer patients.

It's not just breasts -- we are **one community** -- we are

.......A Global Cancer Community

A few weeks ago, I received an email from Peter Kuhn. He was the scientific mentor for the group of advocates I was mentoring at the AACR Annual meeting in New Orleans.

Peter moves at the speed of light. And he asks those of us around him to do the same and his enthusiasm is so damn infectious and his passion to push past the status quo is something I adore. So, when Peter asked, I jumped.

Having no earthly idea what I was doing, or why, he asked Lori and I to take a look at some charts. One of them was quite simple to navigate. The other? Not so much.

Little did I know in that moment, we were being pulled into a collaborative effort to turn the cancer world upside down. It's time for cancer patients to lock arms and see what patterns may be gleaned from the most basic, anonymized data.

Peter began sending us email messages. "Look at this... and I need your comments by 5PM." I would glance at the screen wondering why he didn't mention 5PM WHEN. When one sees an email like that and it's already 1PM, it can't seriously be 5PM That Day but alas, that is what has been going on. And yes, that's how Peter operates.

So, I've been busy. Very busy. Trying to figure out how I can lend my thoughts to make this happen as quickly as possible. Then, #Moonshot Summit was announced and suddenly, in addition to the emails about "can you give me your thoughts within the next 15 minutes," we were told, "White House embargo."

For those who aren't involved in the research community so deeply, when something is embargoed, it means you shut your mouth until the person gets to present their research. Certain people do know what is happening (in this case, it was the team that was trying to get the site together -- generally, it's the press with an advance copy of a research study) but, no matter. When it's embargoed, we have to zip it.

And so I did. Zip It. But now, I hope you will all consider adding some very basic information to an anonymized data base, the cancer map, so we can see what's happening in real time with these diseases we call cancer.


The slide deck which gives a good overview is embedded below. The Medium post which was added to the White House announcement is quite detailed. The post from USC goes into greater detail of the collaborative process between patients and researchers and among institutions. You can read the official press release from the White House and the press release issued by USC, too.

AND..... You can JOIN (the most important part of the whole thing and the only way this is going to work, and work well!!) by going to the newly launched website and providing some very basic information. You can see how quickly we are populating the map. Follow on twitter, join the open Facebook group.

Research hasn't moved fast enough. We are impatient. We want info now. We want fresh data, not numbers from 3 years ago. Not even numbers from 6 months ago. If we want real time info, we can generate it ourselves. CancerBase has provided the platform. Listen to Peter Kuhn and Jan Liphardt whose thoughts became ideas they translated into something actionable. They were at the Summit. Each had the chance to autograph a video snippet. VP Live twitter account shared them. Yeah. They are, each of them, that impressive.

We want to turn this around. And we have the power to do just that. We have our information. We can share it and see what happens.

Let's have a go at this from a different angle. Let's let the patients drive the data they wish to share and let's see where it takes us. Privacy Protected at EVERY turn! The only thing I **do** know? I'm not seeing things move as quickly as I'd like. I think many of my friends feel the same way. And yes, that's you.... if you are in my online "home," you are my friend.

If you're hesitant, I'm asking for your trust. I can vouch for the entire team behind this "wacky idea" and I hope  you all know me well enough. I wouldn't ask if I didn't believe that this has the possibility to be The Game Changer.

Your turn. GO!

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