Crowdsourcing my mom’s cancer

My mom has always been our clan’s chief information hunter and learner.

That is, until last week, when she was diagnosed with a rare cancer: Waldenstrom’s macroglobulinemia.

Mom was a medical research librarian – someone who delighted in being a generous resource for journalists like me.

mother and child

Mom and me in November, 1955

I remember her describing the day in 1981 or 1982 when a reporter called her to ask for information about a newly identified disease with an odd name: Acquired Immune Deficiency Syndrome. Mom checked it out, learned about it, filtered and curated the information, then delivered it to the Miami Herald reporter, likely following up with photocopies in the mail.

She beat me to the Web, of course. In 1992, while we in newsrooms were still bound to “dumb” computer terminals on a tightly controlled Intranet, mom was putting the University of Pennsylvania Biomedical Library on the Internet and later to the World Wide Web.

By the time I went online-only in 1999, it was old hat to mom, who had taken early retirement and was on the way to important things, like earning her Master Gardener’s certification. She told me she missed the calls from reporters, many of whom had learned to search for themselves, traversing the magic Web that connects people and information.

Last Tuesday, she told us she’d been diagnosed with Waldenstrom’s. She was terrifically relieved the doctor had ruled out Multiple myeloma, the cancer that killed her closest brother. But she didn’t know much more.

“I just don’t have the energy to do the research on this one,” she said.

So the junior apprentice medical research librarian team went to work: Find, learn, filter, curate and report back, in language comprehensible to normal mortals.

My wonderful sister-in-law, Mary, went for the building blocks and found the “what” of Waldenstrom’s here.

When the oncologist said mom should immediately begin chemotherapy on Rituxan, my favorite uncle raised warning flags: He found the widely used and astonishingly expensive drug is under FDA scrutiny after being linked to dozens of deaths, as this Wall Street Journal article discusses.

Fortunately, mom has both “the public option” – Medicare – and private health insurance, so she has choices on treatment.

So I went to find the “where,” and the “how” for the best possible care. My reflex was to bring her to University of Texas’ MD Anderson Cancer Center, in Houston – not far from our home in San Antonio – where fabulous doctors successfully treated my uterine cancer in 2006. But my parents are in southern New Jersey, and that’s a long hike from Houston. Another option would be the Mayo Clinic, but the closest facility for her is in Minnesota.

On Friday, I found the Bing Center for Waldenstrom’s Research, under the umbrella of the Dana-Farber Cancer Institute in Boston. It looks to me like the best and closest option for her, at just about 300 miles and 5.5 hours, as the car flies. I will be setting her up for a second opinion and potential new patient status today.

Now here’s the part where my friends who are journalists, research librarians, and just dogged diggers can help: What else or where else should we look for? Is this the best option? What do you know?

And Boston, it looks like my mom is on the way. You be good to her, OK?

Afternote and update: Mom has always been a rebel, and proudly posted a sign in one library that said “No Silence.”

Please take that as a cue to talk among ourselves in the comments, on Twitter and in email!

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The Twitters tell the story

I was asked to be the wrap-up Rapporteur for the 10th International Symposium on Online Journalism at the University of Texas at Austin last week.

The conference had the Twitter hashtag #isoj, and, partly because it is Webcast live, people were watching and Twittering about it in real time on at least four continents. (Here is a link to the #isoj Twitter stream). By the afternoon of the conference’s second and final day, April 18, there were about 1,500 Tweets with the hashtag #isoj.

Thanks to some extraordinary panelists: NowPublic News Director Rachel Nixon, Paul Brannan of the BBC, chron.com Interactive Editor Dwight Silverman and statesman.com Internet Editor Robert Quigley, the “audience-as-storyteller” muse took flight.

For my wrap-up, I went with the muse and tried something different: I let the audience tell the story through their Twitters.

This slideshow is not particularly linear, although I did “group” the Twitters around ideas: First, the back channel conversation, then the collaborative layers being added by the audience around the world, then the discussion of business models for news, then the discussion of non-linear multimedia storytelling. Last, I grouped together comments around the main theme of collaborating the news and news as a conversation.

Besides telling and interpreting and adding to the conference story, the Twitters told their own stories, including a matter-of-fact, but reverberating comment on the lack of diversity on the panels.

I’m sure I didn’t do this perfectly, but considering that I created this 80-slide package in real-time – and added the last slide just minutes before presenting it at about 5:15 p.m. that day – I think it is an interesting rough draft.

Please check out the slideshow and tell me what you think! I know that the audience (read: you!) often has far wiser things to say than the perpetrator of this blog ;~)

Twitter 101

What is Twitter?

It is like a microblog, a place to say your piece, or Tweet, in 140 characters or less.

And it is a place to listen.

Unlike my soapbox of a blog, my Twitter home page is actually a waterfall of other people’s words, blended in a real time river from streams around the world. They are people I have stumbled upon and collected simply by clicking on the button to “follow” them.

Those of my colleagues who already think I’m some kind of weirdo for being on Facebook will probably not be encouraged by the fact that one of my favorite followers on Twitter is a dead guy named Buckminster Fuller. (I’m just saying.)

By Twitter standards, I am a mere amateur, following 150 or so people, a museum and a few news services. (I have not yet made the leap to follow a plant, although it is mighty tempting.) By last night, about 90 or so people including my husband 😉 were following me.

What is Twitter? I think it is giant leap forward in communication and connectivity — and I’m incorporating it in my advanced reporting class at UNLV to help students learn to be better writers, communicators and global netizens.

How, why and when? Here’s the Wikipedia entry, and for that matter, here’s a Wiki started and maintained by Twitter Fans. Laughing Squid posted a nifty little clip and save cheat sheet of commands, and there are more applications born each day.

Thanks to the folks at Strategic Public Relations, here is one of the best tutorials and Twitter hack sheets I’ve seen.

How big is it? Here’s the Swiss Army Knife of stat boxes, Twitstat, real time Twitter analytics. Not to be confused with Twitterholic: Who are these people?

As for where, you can Tweet on your computer or Tweet on your cell phone. But unlike simple phone calls, emails or text messages, Twittering is not ordinarily a one-on-one experience.

A Twitter is a broadcast, tossed out there for everyone to hear.

But that’s just the technical answer.

Twittering, someone else said, is like being in a crowded bar surrounded by people talking on their cellphones. (If someone sends me that link, I would love to give credit.)

Twitter is for parents. “If you can’t let go, just Twitter,” wrote one mom in a delightful New York Times piece.

Twitter can be a lifesaver.

Twitter first got my attention when Chuckumentary got the Twitterverse scoop on the Minneapolis bridge collapse, as is chronicled here in a wonderfully encompassing post in David Erickson’s Internet Marketing Blog.

Last fall, KPBS news in San Diego put up a Twitter headline feed of news on the devastating Southern California Wildfires and massive evacuations. When people are evacuating their homes, putting news on a Web page can be useless if the computer is at home or on the back seat of the car. Sending an email is tantamount to delivering a newspaper to the lawn and hoping they get it. But rushing out a Tweet stream to their cell phone with emergency info is better than gold. As Mark Glaser wrote in his MediaShift column at the time, people quickly learned of the emergency alerts and flocked to the Twitter feeds.

Twitter is news.

I first learned of the death of Pakistan’s Benazir Bhutto from BreakingNewsOn’s Twitters, and I now subscribe to BBC, TechMeme , the Associated Press, and TheNewYorkTimes, among others, so I don’t miss anything.

Journalist Jim Long, aka, Newmediajim, is using Twitter to give a very real glimpse behind the scenes as he, an NBC cameraman, takes off with the White House press corps on Air Force One to exotic places such as Crawford, Texas or Africa, and then back again, to a perch in the Senate press gallery, or even at home with his girl. (The past few days he seems to be in a super-secret and dangerous location whose initials are Baghdad.)

Other journalists do it differently. Take former Wonkette, AnaMarie Cox, who has fine-tuned her snark to a priceless 140-character Tweet from the campaign trail. She’s worth watching, even though there is sometimes a gap of days between posts.

Twitter is community.

It can be like sitting with your friends on a coast-to-coast couch, eavesdropping on a national conversation.

Take the mashup from the Super Tuesday primary night, that let us all see primary-related Tweets live.

Twitter is a village, says Laura Fitton, known as Pistachio to the Twitterverse.

Twitter is connecting people to raise money for breast cancer, as this piece in Loudoun extra.com showed.

Twitter is crowdsourcing. There was Rex Hammock’s low-tech request for help on using a new table saw. There is a Wiki effort to create “Twitter Packs” of people to follow in various industries. And with a lot of help from his Twitter friends,  Guy Kawasaki has created Alltop.com, which includes a section of so-called Twitterati. (If you have to ask …)

Twitter is about groups that are created, morphed and created anew, as people collect around events and ideas. For the TED conference last week, there was a not-so-secret handshake. Put #TED into your Twitter post, and we can all follow along, thanks to the wonders of a search in Terraminds (the Google of Twitter) and an RSS feed. (Here’s the result.) There are slices of RSS feeds for this week’s SXSW festival in Austin, and there will be more that just grow organically.

Venture capitalist Fred Wilson (a big investor in TheStreet.com, where I once worked) calls the “#” slice of Twitter an “event firehose.”

On Twitter things are open and the field is level. You can follow Fred and hear his latest musings, or you can follow Dave Winer, the guy who helped make all of this possible by pioneering and developing RSS, blogs and podcasting too. Or you can follow Howard Rheingold, who foresaw some of these possibilities in his fabulous book, Smart Mobs.

What is Twitter?

It is, says Silicon Alley Insider, a new form of literature, as evidenced by this minute-by-minute account as Ryan K was being laid off from Yahoo!

Written well, a Twitter can broadcast magical poetry of our day-to-day lives, as in this one from Laura Fitton that I quickly “favorited” to share with my students.

Trying to describe Twitter is pointless, Rex Hammock says:

It’s a little like trying to explain the telephone by describing what people talk about on the phone. ‘Telephones are devices that teenagers use to spread gossip.’ ‘Telephones are the devices people use to contact police when bad things happen.’ ‘Telephones are the devices you use to call the 7-11 to ask if they have Prince Albert in a can.’

Twitter, as Doc Searls says, is a prototype.

Twitter is me and you and everybody else talking, connecting and listening.

It is a live window on the world, in at least three dimensions.

 …

Update: Check out this lovely and inclusive compendium of Twitter Resources from Kathy E. Gill’s WiredPen blog. And bookmark this comprehensive Twitter-pedia from Mahalo.

Update 2: The Twiends, a social media company that helps people connect through Twitter, has a nice guide for how to build your follower list at this link:  http://twiends.com/get-twitter-followers And for the more visual among us, Twiends also has a fun ‘How to Twitter’ infographic with beginner Twitter tips at this link: http://twiends.com/how-to-twitter

Note: As originally published, this piece incorrectly said Guy Kawasaki was with Forrester Research. Kawasaki  is managing director of a venture capital firm, Garage Technology Ventures, and he writes for Entrepreneur Magazine. 

Students out to save the news biz

Here’s the reason for my slow posts this past couple weeks, as I and other faculty herded  students from seven universities to the Online News Association conference in Toronto to present youthful and innovative visions for the future of news.

First, a video of students from each of the three projects from MediaGiraffe.

I’m a little partial to the third project, Tandem, which was created by the team I coached. Besides five awesome students from University of Nevada, Las Vegas, team Tandem had magnificent representatives from Ithaca College, Michigan State University, Kansas State and Western Kentucky University. The other projects also included wonderful students from St. Michael’s College and the University of Kansas.

Here’s a link to the Poynter Online column by Joe Grimm about the students’ projects.

And if you really want to hear a nifty presentation, put this one in your iPod and take a listen.  (OK, I said I was partial — I’ve been living with this project since May!)

We’re halfway into it and now, and seeking media partners to implement each of the ideas. I think they’re going to rock!

But most important, for this cockeyed optimist who got into the news bidness to change the world, here’s the point of the project, straight from the Knight Foundation grant proposal:

“Create new ways for people to communicate interactively to help people better understand one another in geographic communities, share know-how and generate passion in solving local problems.”

Back to basics — doing some good for the world!