Everything Changes - The Guide to Young Adult Cancer

Facebook and twitter (like a phone or radio) can be used as fluffy, brain draining diversions, or to have sophisticated conversation about issues like access to affordable care and clinical trials. So how do you use social networking to be an educated and effective cancer activist instead of a slacktivist?

Seductive social media campaigns entice us to mobilize our networks to vote for projects where the most popular cause receives money and/ or exposure. (Take the Pepsi Refresh campaign - they’re so brilliant for not buying Superbowl ads this year when they can rent our brains for free on facebook instead.)

The problem with these online campaigns is popularity does not equal value. The popularity of a project, a person, or organization has zero to do with their efficacy, necessity, skills, or smarts. Plus, cancer is about much more than contests, awareness campaigns and fundraising. In fact, most cancer issues that impact our lives are about science, industry, politics, prioritized evidence-based research, and policy. If you don’t understand these words and how they relate to cancer, you will not significantly impact the future of cancer prevention, outcomes, and quality of life measures.

I don’t have a degree in science or public policy. But I know what I’m talking about when I stand in a Senator’s office asking that Congress demand more funding from the National Cancer Institute for young adult research. And, I can write good letters to my newspaper asking that pharma not be allowed to hold a patent the BRCA gene. I’ve educated myself about these issues online, and facebook and twitter have played an increasing role. To make a serious impact as a cancer activist, consider these tips:

1. Multiply By Five.
Keep track: For each tweet or facebook message you post or comment on, spend five minutes reading a journal or news article about healthcare policy or scientific research. The topics and jargon may seem foreign, but the more you read the more you’ll understand. If you don’t have this much time to spend reading, then you’re spending too much time on twitter and facebook!

2. Retweet Only What You Read.
Retweet information only if you have read the entire article/post, have an opinion about it or can ask an intelligent question, know who wrote it and their motives, and think it’s valuable to others. You’ll have fewer tweets/updates going out which in turns elevates the quality, rather than quantity, of conversation in the cancer community.

3. Get Stingy With Your Time and Attention
I don’t waste my brain or clog my inbox by joining any old facebook group. Before supporting an organization ask: Is the staff or director spending more time on facebook and twitter than working on the backbone of their mission? Are they filling a niche high on the list of cancer priorities and goals? Are they willing to speak up on controversial issues if it benefits their constituents? Will they educate me? @bcaction @cancerandcareer are great orgs doing it right!

4. Nix Online Petitions
E-letter and online petitions hold very little weight with elected officials. If you get an online petition, research the cause and if you support it, call your representative and write a letter to the editor.

5. Old Fashioned News Feeds
I still subscribe to daily and weekly email updates from professional sources and journals. Why? Because the smartest, most effective people I know are not spending their time twittering or on facebook. They’re engaged in science and policy and write more than 140 characters about their discoveries.

How much time do you spend on facebook or twitter. Do they change your knowledge or feel like a brain drain? Any tips for making the most of social media?

For more tips about how to spend your cancer time online, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Vote Now: Should I Delete Spaz as A Friend on Facebook?

I’m not trying to go 6th grade on us; I think this is a great topic up for grabs, with a friend who never minds public exposure or controversy (or at least he didn’t 20 years ago; maybe we’ve changed since high school!)

Tuesday night I posted on facebook “Kairol Rosenthal is debating with Shannon about how much money doctors should make.”

Spaz commented on my wall – he’s a high school friend, with whom I used to watch John Hughes movies, attend peace rallies, and kiss in the park.

Spaz wrote “… You used to be into music, movies, activism and all sorts of other things. Is medical stuff and malignant masses really all you are into now? … It’s like people are born again and only talk about Jesus. If this is annoying or rude, delete me as a friend and I’ll understand. Otherwise. Weren’t you married recently?”

Mr. Malignant
Comments went up on my wall defending me, calling him malignant. But Spaz raised a good question that others wouldn’t dare to. Here’s my reply:

Medicine is the central issue of our time; talking about it is activism. Health care impacts the financial status, productivity level, and quality of life of most Americans.

In the last 6 months, I haven’t touched the Arts section of the Times; I used to drink it in. Instead I read about doctors’ pay, pre-existing condition regulations, and a proposal to split FDA in two. These issues profoundly impact on my life, and yours too Spaz.

I get the born again analogy, and could reply, “I have no choice but to talk and think about healthcare. I’ve got cancer.” But that’s bullshit. I have a choice about where my mind goes, and lately I’ve been questioning the direction. Have I had a day in the last three months where I didn’t ruminate on health care? No.

My Bagels and Pajamas
Patients across the country call and email me daily about insurance, getting second opinions, financial resources, and cancer. I love that I, and my book, can help people.

Some days it’s taxing though to be all about cancer, like today when I am just sad and pissed off at the insidious, malignant tumors in my neck. I tell myself to stop the health care chatter: take more walks, watch more ballet on You Tube, write facebook updates about my breakfast or that I’m still in my PJ’s at 1:57 PM.

But who gives a shit about my bagel or PJ’s? Perhaps nobody cares about how much doctors get paid either, but I think we should. We can’t complain about health care if we aren’t educating ourselves and to be part of the solution.

So yes, Spaz, I’m married to Shannon Fisk, an environmental attorney for NRDC. We don’t want kids, love our dog, are total geeks and night owls, and live in Chicago, but wouldn’t mind moving to New York. Last night we climbed into bed, debating if convicted murderers should be allowed to study and practice medicine after serving their sentence. Conversations like this are my passion, just like music, photography, or gardening is for others. I’m damn lucky that I’ve become a healthcare author, and that something I love (and loathe) so much has become my profession.

How would you respond to Spaz? Would you delete him or not? Do you think about your health more than you would like to? Do you discuss health care issues with friends who aren’t young adult cancer survivors?