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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Wednesday, June 1, 2016

If He's a Watchdog, I May Be a Pitbull

.... as evidenced from, at times, my overly passionate or, I should call it as I see it, my highly opinionated, borderline rabid, point of view on the topic of celebrities, disease and the media.

Gary Schwitzer has been at this for years. Health News Review sorts out the hype because Gary IS a watchdog. With many well deserved accolades and high profile awards, Health News Review has become a trusted source, the trusted source, for breaking down the bullshit.
I've known who Gary was for many years. He has been generous with his time and participated as a guest in more than one #BCSM twitter chat. That community, built around a hashtag and reaching every corner of the globe is a beacon of support, facilitates the dissemination of evidence based findings and fosters communication among many stakeholders. With patients as its heart and soul, clinicians, researchers, journalists and institutions know they can rely on what is attached to a #bcsm hashtag.

If someone, anyone, tries to dilute the value of the hashtag by tweeting out information in a way that is not completely open, fully transparent, and minus the hype, it won't be long before someone will question the voracity of the tweet. Show us the data. In large part because of the vision of Jody Schoger, one of its co-founders, #BCSM which has since spawned a community rooted in evidence based practices,  a community that is not satisfied with a "because I said so" explanation, a community whose reputation within the social media community is above reproach.

Bringing in guests like Gary to discuss a specific area of expertise to help us to become more savvy patients is a genius move. Participating in a chat with a guest to speak to issues like media hype educates the group and enables us to have an interactive discussion and gives us a far better understanding of the landscape.

Gary added podcasts to his always evolving manner of keeping his audience engaged. A few weeks ago, we were put together by a third person to discuss this issue of celebrity know it alls dispensing advice at the bended knee of media outlets to tell just a piece of their story. It's long been a pet peeve. OK, so more than a pet peeve, it's downright irritating. Along with so many others, I am diligent in sharing messages in a way that I hope is helpful to others. We have little voices. People Magazine and TMZ and others have the boom box. We swim upstream to get the message right.

Gary and I began talking about the things I felt were most harmful, or doing a disservice not only to the advocates (of which I am but one of many) but more importantly, to the research and medical community which results in the spawning of misinformation which is then parroted because, "I heard on (insert favorite show, celebrity host, entertainment magazine and in fact, some reputable media outlets that should know better) ......" That game of telephone ultimately causes most harm to the little people, you know, the ones who actually need accurate, unbiased information. The patient in the vortex. As an advocate, this really does piss me off.

What began as a getting to know each other on a more personal level than the open space of twitter, morphed into a podcast. Thankfully, one of us was in control as he recorded our conversation. The links on his website are worth reading. Not just the links to what Gary did to provide me with a platform, but to all of the other work he does. Yes, you WILL have to click over because if you aren't familiar with Gary's work, you should be.

John Oliver's producers are. And that hysterical piece on Junk Science, which I do still love is a bit tarnished having learned that Gary was consulted on more than one occasion to provide advice/information. Gary is too much of a gentlemen to have done anything other than mention it in an offhand manner when we spoke. I looked for credits on Last Week Tonight's website. Zip. Zero. Nada.

I'm big on credits. I'm huge on not taking credit for something I found because someone else posted an article or a link. Gary takes it a step further. He thanked and acknowledged the person who made that email introduction to put us together, and there is an entire page on his website about our conversation (well, his conversation and my ranting) with links leading to links, leading to yes, still other links which, in and of itself, is a commentary on the depth of the problem.

I wish to offer my heartfelt thanks to Gary Schweitzer for a great phone conversation which he turned into this podcast. I am humbled beyond words at his mention of Jody Schoger at the end of the podcast. Jody was still alive when we spoke. In the days between our conversation and the time this aired, Jody had died. I know Jody held Gary in the highest regard. Clearly, he felt the same way about Jody.

As an aside, Gary's podcasts are available for download on iTunes. Should you be so inclined, listen to some (really listen to all of them) and if you are feeling it, write an opinion. It's a process but it goes like this:

  • Use this link to get to the podcast list.
  • Click the blue button that says View in iTunes. This will open up new window where the list of the 20 podcasts produced to date is shown.
  • You can subscribe to the podcast from this page but more importantly, listen to the other discussions he's had. This isn't only about cancer or celebrity - it's about accurate and responsible journalism in the health space.
  • Want to leave some feedback, rate the podcast?
  • Click on ratings and reviews.
  • Click the stars to rate it.
  • If you'd like to comment, just beneath that you can Write A Review.
  • Yes, this sounds like a whole lot of instructions, but it's literally a three click process. 
  • And yes, I did leave a review even though I am the guest in the most recent podcast. I have listened to all of them. Every one is superb.
Again, I offer my gratitude and thanks for Gary's diligence in making sure he gets it right for all of our benefit. This matters. Empowered patients can only be truly empowered through a complete understanding of the landscape. He provides that.


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