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Advocates, prepare if you expect to be credible and collaborate to be effective

I’m inspired by social media friends (my peeps) who diligently and regularly contribute meaningful chatter to Twitter, Facebook, Linkedin and Youtube.

I bet there are ten times as many of us who have the best of intentions but can’t find the time to post commentary, even if limited to 140 characters. My grammar school English teacher would be impressed; she taught use few words, make your point and make it interesting. She’d say, your paragraphs are much too long and your sentences show a lack of vocabulary. Ouch. As I write, I still feel her presence looking over my shoulder, “tsk, tsk, tsk”. And I’m reluctant to hit <enter> on the keyboard.

I think about my dear readers. Who are these people? “Nobody bats a thousand”, is meaningful to baseball fans but meaningless to my English-speaking friends in England. Opps, can’t type that. There are special rules of engagement in social media circles too. I thought “re-tweeting” was copying something original, copying a comment that someone had previously written, until chemobrainfog told me re-tweeting is the highest form of flattery. Yeah, but what if my peeps had already seen the original message? AnneMarie said, Jack, the original author will be flattered and might possibly “like” you. Why wouldn’t they like me? Well, it’s not automatic, she said.

In Research Advocate, Healthcare, #hcsm circles I’m amazed to see how many very bright oncologists and physicians contribute to “the cause” by way of social media. I was blown away at the Tweetup at the recent ASCO Annual Meeting in Chicago when I received “be sure to join us for the Tweetup in room 415”. Assuming a Tweetup was some kind of high-speed interactive tweeting exercise, much like high-speed dating I sat comfortably iPad in hand, waiting for the e-festivities to begin until I noticed a colleague running out saying, see you at the Tweetup. I reread the original Tweet, room 415. Ohmygosh, this is a real-world event, not a virtual, on-line meeting. I ran.

If I mention any of the “rock stars” that attended this tweetup will Doctor Smith get into trouble because he was supposed to be playing golf that Wednesday afternoon rather than hanging out with some of the best and brightest at an #smhc function? Ah, no confidentiality. I get conflicting messages: my peeps say, you must tweet, like, and link more often. My brain says, but don’t hit the <enter> key. I must be too busy because I’m too busy.


Oncology Conferences ASCO AACR DIA PMC

I’ve been busy attending healthcare conferences such as American Association for Cancer Research, American Society of Clinical Oncology and Drug Information Association in 2013. Look at some of the great educational material in the above photo accumulated by mid-year. I’m told these are the best conferences at which you’ll find your best opportunities to build a network of good contacts “in the biz”. I’ve always liked networking, collecting business cards and more important, collecting new friends. Many go way back; some well before email. I carefully write comments on the back of each card so I’ll remember. When I get home, I scan the cards into my Contacts. Often, I’ll see a face pop up from LinkedIn or wherever. Ah yes, I remember you. I make a concerted effort to send a hello message to people whom I find particularly interesting. More work, less time to tweet. BTW, if I haven’t sent you an email hello, it’s probably because I’m too busy. If you’re reading this, you’re interesting!

Why so busy? I’m convinced that to be an effective, thoughtful, credible Research Advocate, we must get repeated infusions of education and new information. Our experience as patients and caregivers is incredibly valuable but can have far greater value when our information and perspective is based on correct, proven assumptions. How can I honestly recommend that patients seriously consider Clinical Trials as a possibly, safer, more effective treatment option when compared to some conventional chemotherapies especially when we consider what we’ve learned from genetics and genomics? They key word is credible. How can I help a patient who’s been diagnosed with a stage IV terminal cancer? How can I avoid getting in over my head?

In spite of all the complaining found in chat rooms, in social media, virtually all serious healthcare professionals, such as clinicians, oncologists, investigators, pharmacologists, and bioinfomaticists follow a proven, unemotional scientific process. They rarely mouth off or take a defensive position.  So most claims of wrong-doing go unanswered. 

Advocate with gas can and flameFrankly, I’m disappointed with many activist advocates found on-line. Some run into the room with a gasoline can, an open flame and shout, listen to me.  No, thanks I have to check with legal.

The insults, lack of etiquette, focus on their particular (bad) treatment cause them to be seen as a negative force for change rather than exploring positive moves. Most unfortunate is the oft-accepted unbridled bashing of healthcare providers, payers and pharmaceuticals the most regulated of all industries. Patient advocates can be more effective by embracing an informed, collaborative approach rather than confrontation. Do you agree or disagree?  Your thoughts?

Hope to see you at an upcoming conference.


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From Julia | On January 03, 2014 @09:58 am
Great article and a must read. Congratulations! Patients do qucliky disseminate what's valid vs. what's harmful or wrong/irrelevant. Social Media is a great help in healthcare, for patients at least. I hope to see more medical professionals using it as a good education and patient support tool.
From Deb Madden | On July 04, 2013 @11:57 am
Bravo, Jack! Becoming an educated patient advocate and being committed to meaningful collaboration is the most powerful way to become a true partner in one's own healthcare team and to make a positive, impactful difference for all patients. I'm so glad that we met as "fellow Fellows" during the recent DIA meeting! I've just recently entered the blogosphere and would be honored if you would visit my blog and provide me with your thoughts and feedback. Called "Musings of a Cancer Research Advocate," it's located at www.draemadden.wordpress.com. (I've also recently entered the "tweetosphere," with the handle @AdvocateDebM. I look forward to conversing with you further on Twitter!) My best, Deb
From Tim Flannery | On July 03, 2013 @05:49 pm
I agree, why must patient advocates take it out on the institutions that provide their care. If care is a problem, get involved and fix it. Tim

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