'Cancer moonshot' to start crowdsourcing stories, studies today on Medium

Jayne O'Donnell, USA Today | May 11, 2016 |See Original Here

[COMMENT: Get your pens and pencils ready. The cancer moonshot will be looking for your stories to help accelerate its efforts to find a cure for cancer.  Please be prepared to offer your Rhabdo story - and don't forget to send it to FocusOnRhabdo so we can accelerate the publication of our book on Rhabdo. - Alan]

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Vice President Joe Biden participates in a roundtable on cancer after a tour of the research lab at the Huntsman Cancer Institute Friday, Feb. 26, 2016, in Salt Lake City as part of the White House's cancer "moonshot." (Photo: Rick Bowmer, AP)

Vice President Biden's "cancer moonshot" will start crowdsourcing patients' stories and experts' research Wednesday on the blog platform Medium.com to help accelerate efforts to find a cancer cure.

President Obama put Biden in charge of the so-called moonshot during the State of the Union address in January and later proposed to spend $1 billion on cancer research. The effort is dubbed a moonshot because of its scope and big-picture hopes - reminiscent of President Kennedy's plan 55 years ago to land on the moon.

Biden lost his son, Beau, to cancer last year.

Seven working groups were established this week for the moonshot, according to an essay on Medium by National Cancer Institute acting director Douglas Lowy. Each group has more than a dozen subject matter experts and patient advocates. Starting this week and through the middle of summer, the working groups will discuss opportunities for cancer clinical trials, data sharing, pediatric cancer, immunology and prevention, precision prevention and early detection, implementation sciences, and tumor evolution and progression, Lowy wrote.

About four years old, Medium has become one of official Washington's favorite ways to bypass the traditional media with messages. The White House has used Medium several times, including to release Obama's last two State of the Union addresses early and to post the Iran nuclear deal with congressional statements of support.

Now, Biden says he wants people with cancer stories of their own to join cancer researchers, oncologists and others to share data and their expertise on Medium.

The new Medium "publication" launches with essays by Biden, recent breast cancer survivor Sen. Claire McCaskill, D -Mo., and Lowy, a physician who is a physician. .

McCaskill said Tuesday that the Medium publication will be "a place the community dedicated to eradicating this disease ... can all hang out."

"I had no idea how big this club was until I made my diagnosis public," said McCaskill, who described an "outpouring from thousands of perfect strangers."

As Lowy put it Tuesday, the White House and National Cancer Institute are "casting the widest net possible by inviting contributions from everyone."  They are also offering several places people can contribute, including scientific ideas at a National Cancer Institute site and a new White House hub.

Pat Mastors, who heads the Patient Voice Institute which gathers people's stories, says that while "I love the ambition" of the moonshot, she hopes the Medium element adds important context.

"While we look for a cure for cancer, I hope we don't lose focus on what matters to patients and families, since many treatments can be so toxic, debilitating and costly they rival the effects of the disease," said Mastors, who has family members with cancer. "If you have your nose in a Petri dish, you can be hitting the mark but missing the point."

Medium is like a higher-brow - and wonkier - version of Tumblr without all the memes. It has about 25 million unique monthly visitors and averages about 75,000 posts a week.

Contributing bloggers have their own pages that people can follow.  After Bono posted recently about poverty and Africa, Melinda Gates wrote a lengthy response. That then appeared on Gates' page and Bono's, because he recommended it. If he didn't, it would only have been on Gates' page. That's one of Medium's ways to discourage Internet trolls.

Medium will be a "hub for conversation" where Biden and others can "share stories of progress," says Matt Higginson, Medium's politics and government affairs chief.

"There are many places to write on the Internet, but there aren't many where you can write and have them reach just as many people as the president of the United States or to live alongside the vice president," said Higginson.

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In this photo taken Jan. 28, 2016, Sen. Claire McCaskill, D-Mo. speaks on Capitol Hill in Washington. (Photo: Manuel Balce Ceneta, AP)

While the typical college student might struggle to compete for eyeballs with a sitting senator, Higginson says most of Medium's content is from "undiscovered writers" who have great potential to go viral with their "raw perspective."

In McCaskill's essay, she described her experience with cancer: three weeks of treatment that included a lumpectomy, radiation and "a good prognosis."

As a mother and cancer survivor, "I can’t imagine a better tribute to a child," than the moonshot, wrote McCaskill. "We have to be supporting cancer research with everything we’ve got."