Engage With Grace: 2nd Annual T-Day Weekend Blog Rally

Today, we received an invitation to participate in the 2nd Annual Thanksgiving Weekend Blog Rally to promote Engage With Grace, a national initiative dedicated to facilitating conversations about end-of-life preferences. Since Engage With Grace is all about generating clear, direct and honest communications, how could we not participate?

Just so you know, this post was passed along to us by colleagues within the healthcare social media (#hcsm) community on Twitter. We love Twitter! It was written by Alexandra Drane and the Engage With Grace team and edited by us which, in this instance, means Meredith could not resist reworking the text.

Some conversations are easier than others.

During Thanksgiving weekend 2008, many bloggers participated in a blog rally to promote Engage with Grace: The One Slide Project. The rally was was organized to encourage families to discuss end-of-life care issues while gathered for the Thanksgiving holiday weekend. It was a great success, with 100+ bloggers spreading the word.

Our original mission hasn’t changed, but since it has been a tumultuous year, we decided try something different this holiday.

A bit of levity.

At the heart of Engage With Grace: The One Slide Project are five questions designed to get the conversation started. (You'll find them at the end of this post.) They’re not easy questions, but they are important ones. To help ease everyone into discussing these tough questions, we offer five seasonally-related questions that are pretty easy to answer:

Silly? Maybe. But during the past year, we've discovered how five questions in plain, simple language can effectively reduce the complexity, formality and apprehension that often accompanies end-of-life discussions. We’ve been fortunate to hear uplifting stories from folks who have used these questions. One man, for example, shared how surprised he was to learn that his wife’s preferences were not what he expected. The One Slide is now posted on their refrigerator.

So, here are the real five questions to help you and your loved ones engage with grace. Please think about them, discuss them and document the answers. Wishing you and yours a holiday that’s fulfilling in all the right ways.

More highlights from e-Patient Connections

With so much going on in the world of healthcare communications viz., recent FDA social media hearings, I wondered if I should bother hearkening back to notable presentations during last month's e-Patient Connections conference. In an earlier post, I mentioned a few that captured my attention and focused on Val Jones' Tale of Two e-Patients.

Over the weekend, I took another look at Janice McCallum's Publishing for e-Patients and Carlen Lea Lesser's Boomers in the Fourth Turning. Turns out, both presentations stand the test of time or, more accurately, my attention span. I still find them thought-provoking. I like having my thoughts provoked.

Take a look at Carlen Lea Lesser's presentation for a crash course in Strauss and Howe's generational theory (cf., The Fourth Turning). Carlen uses it to underscore the importance of generational awareness for crafting messages for Boomers. "Start talking about what it means to be healthy at 65, [do] not convince them to be 30 again," she says. In my rarely humble opinion, this point cannot be said/presented too often. Those of us in healthcare communications must become more sociologically savvy about our industry and its surrounding culture. And while looking at her deck, notice how she presents useful content in an engaging way.

For another content-rich presentation, I recommend reviewing Janice McCallum's deck. In it, you'll find slides depicting the current complexity of medical and health content publishing. Janice asks, "Can traditional medical publishers make the transition [to meeting the need for services that organize, cleanse, design, aggregate, integrate, market, sell, analyze and report healthcare data] or will new players take the lead in providing health content for emerging markets?" Good question; one worth pondering. As healthcare communicators, we must account for changes in how health content is supplied and demanded.

To decide whether a communication is effective, I ask these three questions: 1) does it inform? 2) does it educate? and 3) does it inspire action? I could, in real time, answer "yes" to all three questions for both presentations. Happy to report that I come up with the same answer nearly a month later. Thanks, Janice and Carlen, for the information, education and inspiration!

And the tweet goes on. . .

Last time I checked, approximately twenty minutes ago, comments in response to negative feedback about tweeting during e-Patient Connections 2009 seem to have tapered off. Was this a twempest in a twea pot? I say, "no." Conference-based live tweeting (or something like it) is here to stay.

If you haven't been following this story within a story, you can get up to speed by checking out Kevin Kruse's post and comments on it here.

Simply put: everything tweeted with the hashtag (#epatcon) was posted during that conference on a big screen for everyone to see. Some percentage of attendees* were annoyed, upset or offended. Not liking being characterized as "rude, unprofessional and disruptive," the healthcare community on Twitter shoved right back.

Welcome to the newest new journalism which, oh-so-ironically, is reminiscent of what constituted journalism for centuries. Until the early 20th century, journalism contained a lively mix of accurate reportage, sensationalism and rants. Seems like we've headed back in that direction. Whether that's a good thing or a bad thing remains to be seen — and judged.

Meanwhile, technology will continue making it possible to report substantive content and provide color commentary in real time for all the world (if it gives a tweet) to see.

As a big fan of the First Amendment to the United States Constitution, I tend to err on the side of free speech. Still, as others have pointed out, perhaps a bit more discernment and discretion is in order. The technology that makes full disclosure possible, also allows us to conduct side conversations privately. I, for one, probably need to go back to passing notes instead of posting some of my tweets.

Still, I will continue tweeting what I hope is an amusingly helpful mix of content and color. In my case, color commentary includes observations about the social world around me, its dominant culture and emerging sub-cultures. In addition to tweeting direct quotes or synopses, I tend to mention what people are doing, eating and wearing. That's what those of us who are professional sociologists and anthropologists are trained to do.

If I succumbed to the testing, I'm sure we'd discover that my tendency toward snarkasm has been genetically determined. (Mommy, Daddy...thanks!) And, for those irked by the candy comments, show some mercy. I am powerless over chocolate, in its presence my life becomes unmanageable.

*We don't have nuanced data about who complained. Would be helpful to know age, sex and healthcare industry sector of each complainant.

e-Patient Connections: Tale of One Presentation

A week has passed since the ePatient Connections Conference, and I'll admit to still sorting through content as well as assimilating my on-site experience. Clever moi, I knew that if I waited, others would provide round ups, which indeed they have.*

Fine by me. I much prefer zooming in on the one or few presentations that captured my full attention and got me thinking in more complex and different ways.

Presentations still roiling around in my skull mush and gut are (in order of appearance and for different reasons): Alex Khomenko's DNA & Personalized Medicine, Janice McCallum's Publishing for e-Patients, Val Jones' Tale of Two e-Patients... and Carlen Lea Lesser's Boomers in the Fourth Turning. (You can find these folks on Twitter!)

Indeed, although Halloween has come and gone, I remain especially haunted by Dr. Val's PechaKucha presentation. Without the audio, it's difficult but not impossible to experience the impact of her cautionary tale about two e-patients with cancer — delivered as a limerick supported by compelling images.**

One woman (dx: colon cancer) found information online providing the data and strength she needed to challenge her doctor. After firing him, she got her butt to an academic medical center and received innovative treatment that saved her life. The other woman (dx: metastatic breast cancer) was not as fortunate, in part because she got caught up in what Val characterizes as the "conspiracy level mistrust of science."

Tale of Two e-Patients delivers a much-needed message about the importance of science-based medicine vs. unproven folk remedies, not to mention the support of well-meaning but under-educated friends. This must-see-and-hear presentation demonstrates the value of using whimsy and creativity to make key points about participatory medicine. And, I urge this as someone who worked in the holistic health industry long ago but also long enough to appreciate its promises and perils.


*For fine examples of round ups, see posts on these blogs: BioJobBlog, Healthy Conversations, Impactiviti, Notes from the Back of the Book.

**Val not only wrote the limerick but chose the images and basically designed the deck. Note: The photo of Stage IV metastatic breast cancer is clinical image, not one of the real patient.

Spitting Trouble

This past week, Meredith and I attended the ePatient Connections Conference in Philadelphia, along with a couple hundred or so other folks in healthcare marketing and communications. The conference was great, the people were terrific, and fingers were flying across laptop keyboards filling the #epatcon Twitter stream with plenty of commentary.

We saw several memorable presentations—and, unfortunately, a few surprisingly unremarkable (and downright dumb) ones. But, for me, the one that provoked and mind-spanked my brain the most was given by Alex Khomenko of California-based 23andMe. Nothing like having the future smack you around.

23andMe does in-home genetic testing. First, how cool is that? Get your kit mailed to you, spit into a tube, send it to the lab and, in a couple of weeks, you’ve got your personal DNA analysis.

For a lot of people—including Meredith, who spat but not into a tube during Alex’s presentation—that’s where it gets dicey. Among the absolutely legitimate questions:

• What do you do with your analysis once you get it?

• Who owns your genetic data now? You? The DNA test vendor (whether it's 23andMe or someplace else)?

• What are your expectations in the first place?

• What about disparity? Not everyone can afford these types of tests (they are getting cheaper, though).

• Does GINA really protect you from the big, bad insurers getting a hold of your DNA information?

• Are you just a megalomaniacal narcissist?

Great questions, all. And, not such easy answers—yet. But, here's what's significant about this presentation: It offers a way to get personal and up close. That's part of what epatients say they want—individualized, customized medical treatment.

A short time ago, I spoke with a cardiologist who said that the era of personalized medicine is coming—pharmacogenetics. Right drugs for the right patients. Whether we’re ready for it or not right at this moment, organizations like 23andMe are on the front lines helping to make that happen.

Photo: © Dileepkmarvs, Dreamstime

Health Literacy Month (Bad Spellers of the World Untie)

Health Literacy Month was created by Helen Osbourne, M.Ed., who decided in 1999 to raise awareness about the importance of clear and coherent health information.

This year's theme is: "Why Health Literacy Matters: Sharing Our Stories in Words, Pictures, and Sound." So far, daily posts have included a podcast of songs written and performed by Mache Seibel, M.D.; a patient's thoughts about how doctors might fix their atrocious handwriting; and a slide show about the Health Through Art organization in Berkeley, California.

So what if we're halfway through October? It's never too late to observe this observance, if only by observing that nearly 90 million Americans can't understand the most basic information about health and wellness.*

What are we as healthcare communications professionals going to do about this? We could start by noticing what's going on in the public domain. Thanks to Google Alerts, these tidbits about health literacy have already landed on my screen this month:

• An extra edition of Aetna's Monthly Health Watch which, in addition to describing that company's efforts to communicate more clearly to internal and external audiences, provides guidelines for making communications more consumer-friendly.

• A 50-question Wellness and Health Literacy Test developed and used at New Tech High in Zion, Illinois, worth zipping through to note how health is distinguished from wellness; distinguishes among types of health (e.g., physical, mental, emotional, spiritual). Full disclosure: I got 41 out of 50 correct for a score of 82% and a grade of "B." I'm sure I would've done better had I guzzled a can of Diet Coke as a brain booster.
  

• A set of twelve healthcare literacy and communications flash cards, which offers a glimpse into what's considered important content for pharmacists. Unfortunately, it's flawed by poor writing and egregious spelling. Good thing it's also National Sudden Cardiac Arrest Awareness Month.

*This sentence is an example of: a) irony; b) redundancy; c) illiteracy d) bad parenting

h/t @nickdawson for inspiring the title.

Save the Boobs blasts the Attention Glut

Guest post by Fard Johnmar, founder of the Path to the Blue Eye project, a global initiative to foster greater collaboration and knowledge sharing among healthcare marketing communications pros. Learn more about Fard by visiting Envision Solutions.

Sex sells—especially when combined with blatant lust. Last month, Rethink, a nonprofit focusing on breast cancer education, released a racy and highly controversial public service announcement (PSA). It was designed to raise awareness about Rethink's annual charitable event, the Booby Ball.

"Save the Boobs" features Aliya-Jasmine Sovani of MTV Canada, walking around a swimming pool in a skimpy white bikini. The PSA shows people openly ogling her while breast cancer awareness messages display on-screen.

By any measure the PSA has been successful. Rather than being relegated to repeat showings on broadcast television at 3:00 a.m., it has received significant coverage on mainstream media and blogs. Plus, according to a study recently released by Media Curves, "the majority of male (84%) and female (79%) viewers reported that the PSA was effective." Women, however, were more likely to view the ad as offensive. Rethink's founder, M.J. Decoteau has said she was seeking to "stop people in their tracks." She certainly succeeded.

Back in 2007, Edelman's Steve Rubel talked about how we're living in the age of the Attention Crash. He argued: "We are reaching a point where the number of inputs we have as individuals is beginning to exceed what we are capable as humans of managing."

I would redefine the phenomenon he describes as the "Attention Glut."

With Facebook, email, Twitter (especially Twitter) and other online technologies vying for our attention, we have too many things to process. More than ever, we need people to help us figure out what's important and what's not.

The Attention Glut is a big problem for healthcare marketers. Although we have access to many more communications channels, it's more difficult to capture attention. Rethink's PSA (whether you agree with this tactic or not), offers a few lessons we'd all do well to remember:

• Tell a compelling story (check out Made to Stick for more on this topic).

• Appeal to basic human emotions (love, compassion, lust, etc.).

• Entertaining people is never a bad idea.

What's your take? Do you have examples of campaigns you've planned or participated in that helped you blast through the Attention Glut? Please use the comments box to continue this discussion.

Having our say with the FDA (I)

Last Wednesday, the FDA issued a public hearing notice and request for comments about using the Internet and social media tools.

Our colleagues at last night's #hcsm (healthcare social media) chat spent nearly fifteen minutes discussing this blessed event. By this morning, John Mack of Pharma Marketing News had set up a hashtag for Twitter-based discussion (#fdaSM) and posted a flurry of comments and questions on the topic.

Is there anything left to write about? Uh...yes.

After plowing through all twelve surprisingly readable pages of the meeting notice, we're zooming in on what we think healthcare communications professionals need to be doing. Based in part on comments during last night's chat, here's the first point we wish to make:

This FDA public hearing is a great opportunity,
so let's make the most of it.

Let's not waste time making up stories about what potentially nefarious schemes the FDA might be conjuring up to slap down Internet and social media-based communications. Instead, let's gather our creativity, wits and whatever data we have to help FDA officials tweak regulations already in place for advertising prescription drugs, biologics, and medical devices.

From the announcement, "...the FDA recognizes that the Internet possesses certain unique technological features and that some online tools that may be used for promotion offer novel presentation and content features."

Our recommendations for next steps:

1) There are five issues presented for discussion. Choose one and prepare focused, clear, concise and compelling written comments.

2) If you have data "to support conclusions about whether different types or formats of presentations have a positive or negative impact on the public health," now is your time to shine. (See: Q2/2nd bullet point).

3) Written and electronic comments will be accepted until February 28, 2010, so it may make the most sense to wait until transcripts of the hearings are available, approximately 30 days after the hearing to submit your input.

4) Think through whether you want to (or may) offer comments as a representative of any of these categories: patient, caregiver, healthcare professional, patient group, Internet vendor, advertising agency or public relations firm.

5) Consider whether you want to provide comments as an individual or as part of a group effort. In either case, get your comments reviewed (trans: edited for clarity) by an editorial services professional. And this is just off the top of our skull mush, so you can just imagine what we'll have to say in future posts.