Breaking my long silence

Blogging is supposed to be personal.
But it’s been impossible for me to write anything personal about health or medicine since Irwin died nine weeks ago, on November 28. Every time I’ve tried, the noise in my brain has silenced my fingers.
My mental attic is like the Collyer brothers’ infamous apartment: stuffed with facts, factoids, memories and opinions about the risks and benefits of modern medicine, the perils of over-treating elderly people with multiple diagnoses, and the outrageous costs involved.
Now I’m pushing through the teetering stacks and digging out a few observations to share.
First of all, thank God for geriatricians who don’t feel compelled to practice heroic medicine.
Irwin was an old military man who smoked during his 27 years in the Army and probably drank more than his share, too. But by the time he and my mother married in their 70s, he was a physically active guy, not overweight, who no longer smoked and who enjoyed one beer a day. Within a couple of years he developed a pleasant form of dementia, his chronic obstructive pulmonary disease worsened, and he had several small strokes.
Pretty soon it became unsafe for either of them to drive in rural Florida, where nothing was in walking distance, and they moved next door to us in 2008.
Irwin was 81½ years old when he and my mother became patients of an Athens internist who is board certified in geriatrics. To her credit, she weaned him from some of the many drugs he’d been prescribed in Florida, where he drove from specialist to specialist but had no one coordinating his care.
Irwin was not the easiest patient to deal with. He’d been a medic for 25 years, and didn’t realize that dementia had stolen much of what he’d known. So he held a lot of opinions. Also he read dozens of popular health magazines and newsletters, some reputable and some not so, and he wanted every test and surgery he read about. The doctor reassured, rarely referred, and calmed Irwin’s worries. They had a good relationship.
The doctor was genuinely worried when she saw him on Halloween. The presenting complaints were fatigue, worsening confusion, a swollen belly and episodes of urinary incontinence. She ordered a battery of blood tests and by Friday we knew that he had liver failure. At her suggestion, we updated his advance medical directive.
Irwin’s condition tanked over the next two weeks. He was admitted to the intensive care unit at our nearest hospital on Nov. 15. X-ray, CAT-scan and ultrasound studies indicated he had lung cancer that had metastasized to his liver and that both were advanced. We knew he would not come home again.
Seven days in the hospital cost $37,612.
That’s a great deal of money but the tab could have been worse. Although the imaging studies clearly indicated cancer, we could have given the go-ahead when an oncologist said he could confirm the diagnosis by biopsying lung and liver, and that chemotherapy might be an option.
Our family decided to pass, and Irwin’s primary care doctor agreed.
There was no point in keeping Irwin hospitalized after we turned down additional procedures and treatments, so the discharge planner helped us arrange transfer to a local nursing home where hospice care was available.
After one week in the nursing home, Irwin died peacefully with us at his side. He was 84½ years old to the day. His final illness was short, no one was pounding on his chest or intubating him when he died, and our family was not bankrupted by the experience.
One reason Irwin’s last illness was brief is that his geriatrician discouraged him from mobile “whole body cancer scans” and other dubious diagnostic road shows. What would have happened if we’d learned he had lung cancer one or two years earlier? Irwin and my mother might have insisted on biopsies, surgery, chemotherapy – harsh, expensive interventions that can worsen the quality of life without extending it by a day.
As it was, we lived with the knowledge of his terminal cancer for only two weeks – which was long enough.
I’m grateful for the advance medical directive that kept the crash cart out of his room and allowed a quiet death.
Finally, we’re all thankful for Medicare Parts A & B and for Tricare for Life, the health insurance benefit earned by career military personnel.
None of which changes the fact that we miss the old guy every day. You can read his obituary here.

Newsers and geeks: come together

Shouldn’t the developers of cool new media tools and journalists be going to the same parties?

Of course they should.

But if this were happening, I would have swapped a lot more hugs and high-fives during the 2011 MIT-Knight Civic Media Conference back in June. Close to 400 people showed up to cheer the Knight News Challenge Winners for 2011, who together took home $4.7 million. You can read all about the winners here.

The three-day conference wrapped around the awards had about 200 invited participants. I knew only about a dozen of them, mostly people like me whose programs are funded by the Knight Foundation and those who work for the foundation.

This was a shock because at my core professional conferences, National Association of Science Writers and Association of Health Care Journalists, the majority of participants looks familiar to me– whether or not I can summon their names at a moment’s notice.

At the MIT meeting, young people who embrace geek culture ruled the conference sessions and parties. They’re devising cool new tools for visualizing what’s important in huge and messy databases, identifying credible sources when an international crisis unleashes a tsunami of tweets, or mapping oil spills by dangling cheap cameras from balloons or kites. And much, much more.

This is exactly the stuff that activates the “gee whiz” gene in the geeky science reporters who’ve been my mentors, peers and students. But my peeps were not at MIT and they didn’t have the chance to hear about new tools for gathering information, engaging citizens, and spreading news every which way.

At this meeting, the civic media people were talking mostly to themselves and the people who fund their work.

One prominent speaker came close to saying that the goal of the civic media movement is to make journalists obsolete. Another said that when major broadcast news organizations pick up a trending topic on Twitter or a viral YouTube video, they’ve been “hacked.” People laughed.

I found this disturbing and annoying. It sets my teeth on edge just like hearing accomplished journalists dismiss Twitter or scoff at the idea that members of a community can talk among themselves, without a reporters and editors to mediate.

Journalists and civic media activists have a lot to learn from one another. Even brilliant data analysis is no good unless it can be told as a compelling story that fires up the populace, one of the award winners admitted. Reporters and editors know something about this.

And the fact is that civic media folks and journalists all want to change the world. We all love the rush of discovering what others have overlooked, connecting the dots, figuring out what it all means, and – if we can – fighting injustice and moving people to act.

So it doesn’t make sense to disrespect one another or talk about putting anybody out of business. It does make sense to bring our knowledge, skills and passion together. An organization called Hacks/Hackers, whose tagline is “join the media revolution/rebooting journalism” has begun doing this, with journalists and techies launching local chapters in the United States, Canada, and a few Latin American and European cities.

Here’s another idea: integrate civic media tool developers into the programs of all the major journalism conferences. Personally I’d like to start with AHCJ 2012, the Association of Health Care Journalists conference set for next April in Atlanta.

Which brings me to the robot (pictured above) created by Dutch designer Joris Laarman. She’s part of the “Modern by Design” show at the High Museum in Atlanta, where visitors watch her pluck tiny steel cubes from a tray, dab on glue, and deftly slot them into position. The startling result of this high-tech effort is a high-style, Baroque side table constructed of metal instead of lustrous wood.

At first the juxtaposition is startling, but then it makes perfect sense. If a Dutch robot can win friends in an Atlanta art museum, surely it’s not a stretch for professional journalists and civic media activists to come together.

Coming soon: Savannah youth journalism

The best way to find out what people want is to ask.

And when Savannah economic development researchers asked middle- and high-school students what they wanted from a new community center, the answer was clear.

Teenagers in West Savannah and adjacent neighborhoods did not want a gym or a weight room. Instead, they yearned for better job skills, information about managing money, and evidence that their futures could be brighter than Outkast’s “West Savannah.”

Two years later, the Moses Jackson Advancement Center (MJAC) has a computer center and print shop, a culinary program that teaches accounting and financial management skills, a community garden, and a sandwich shop and retail store in the works. I visited for the first time in late May and was struck by the vibrancy and energy of the place.

Youth programs are housed alongside the Lady Bamford Early Childhood Center and a day program for seniors. When I was there, the seniors left the building laughing loudly, but teens working in the computer lab and the kitchen ignored the ruckus.

The West Savannah portrayed by Big Boi is a world with too many teen mothers, too few jobs, too much drug dealing and not enough hope. These problems have not disappeared since he moved to Atlanta some 20 years ago but things are looking up.

No one can miss dramatic improvements such as the $50 million makeover of the old Fellwood housing projects into a handsome, mixed-use development with 300 energy-efficient new residential units. This was mostly underwritten by HUD, the federal Housing and Urban Development agency.

Less obvious are educational and community engagement programs at MJAC, paid for by a special HUD/HBCU Project at Savannah State University led by Project Director Anne Roise. The principal investigator on this project, whose invitation brought me to West Savannah, is Dr. Ronald Bailey, Interim Chair of Political Science and Public Affairs at SSU.

Two years ago, some Grady colleagues and I collaborated with the Greene County Public Schools on an experiment in youth citizen journalism. You can read all about it here. We learned that middle-school students can research, report and produce a documentary portrait of health in their community, focusing not just on what happens when people are sick but on social and structural factors that influence the health of families and communities.

The lead teacher in Greene County was Marona Graham-Bailey, who was a UGA graduate student in 2009 and who is also Dr. Bailey’s daughter. The young reporters in Greene County learned to research and report video stories, set up and conduct interviews, and organize their material into narratives by working with UGA grad students and faculty.

Marona and I met with an interdisciplinary team of educators, youth development specialists, and college students who’ll teach the same skills to West Savannah teens this summer during Summer Camp at MJAC. Students who sign up for this intense, two-week health journalism camp will spend their mornings working with faculty and students at SSU and their afternoons reporting stories in their own neighborhoods.
The camp begins on July 5.

Move over, Big Boi: there are new stories to be told in West Savannah.

Photo, from left: Knight Chair Patricia Thomas (that's me), Marona Graham-Bailey, Anne Roise, Dr. Ronald Bailey. Photo by Arsenio Key.

Pizza and a movie

It was the classic Friday night date: pizza, movie and hilarity with friends.

Except that it happened at noon on a Wednesday, when The Med School Project thanked MCG-UGA Medical Partnership students, faculty and staff who have been interviewed (some several times) and who have allowed HMJ videographers to document study sessions, soccer games, community service activities and even lunch preparation in their homes.

The April 27 pizza date, organized by HMJ administrator Anettra Mapp with help from Toni Phelabaum, featured screenings of five new Med School Project videos and one collaboration and a video about Nuci’s Space produced jointly by HMJ’s Katie Smith and a team of medical students. Dr. Leslie Lee and Professor Patricia Thomas (that’s me) emceed the event.

The full set of 21 Med School Project videos are available at www.YouTube.com/HMJatUGA Warning: some provoke the unseemly laughter and teasing shown in the above photo shot by our friend Dot Paul from UGA Photography Services.

The videos document the new school’s first year, examining the challenges faced by students, explaining the teaching philosophy and integrated curriculum, and showing how the arrival of a new medical schools is already affecting local hospitals, clinics and neighborhoods.

These videos were reported, written and produced by 9 graduate students. Sonya Collins and Maegan Rudd were part of the fall semester team before graduating in December. Seven other students signed up for independent study and kept the project going for spring semester: Yanli Liu, Kirk McAlpin, Lori Pindar, Michael Posey, Kathleen Raven and Stephanie Schupska along with ace videographer and editor Katie Smith. Katie was the magic ingredient.

The pizza lunch introduced the new reporting team, Robyn Abree, Jessika Boedeker, Felicia Harris, Marcie McClellan, Laura Smith and Chelsea Toledo. They’ll take over the project in the fall, just as the second entering class of medical students arrives and renovations get underway at the former Navy Supply School.

The launch of the new medical campus is an amazing learning opportunity for Grady College grad students in health and medical journalism. Medical schools play some part in every major story that can be told about health, health policy, biomedical research or advances in clinical care.

The new campus has also sparked new collaborations with the Franklin College of Arts & Sciences, College of Education, College of Public Health, College of Veterinary Medicine and the Department of Theatre and Film Studies.

What is most astonishing is that we’re only one year into this adventure. So stay tuned.

Deep in the heart of Tweetsas

Vivian Schiller was in awfully good spirits for someone who had just lost her job as CEO and president of NPR.

Sure, she’d been deposed by a James O’Keefe sting operation, but now she was in Austin and hundreds of journalists, J-school professors and grad students, researchers and social network mavens shook off the Lone Star and tequila cobwebs and showed up at 8:45 a.m. to find out why Schiller is optimistic about journalism.

It was April 1st but Schiller wasn’t fooling around at the 12th International Symposium on Online Journalism (#ISOJ). In her keynote address she laid out 7 reasons for being cheerful about the future:
• The time may finally be right for news paywalls; after all, people are accustomed to buying at least some of their music from iTunes and, in addition, “brand is back.” Scale still matters, but tablet users in particular may be willing to pay for the good stuff.
• Speaking of quality, if legacy media are willing to invest in local content, they can win the battle for local users.
• Twitter is coming into its own as a legitimate tool for gathering news. Curated feeds from Egypt illustrate the point.
• Apps are “the holy grail of engagement.” People with NRP apps on their smartphones and tablets listen to and read more news.
• The web is not dead when it comes to attracting new users – in fact web browsers are still the best way for new users to discover a news organization.
• That said, the top news organizations are thriving by becoming “their own disruptors.” Smart ones realize that different platforms serve different audiences in different ways, and content must be shaped accordingly.
• Digital natives have come of age, they still care about the values of real journalism, and J-school enrollments are up. These are the people who will reinvent business models for journalism. Schiller said that members of her generation won’t be able to do this.

There’s ample evidence that wonderful, talented young journalists are climbing the salmon ladder in J-schools and on the job. Pushing the reinvention of the media economy off on them, along with the responsibility for establishing world peace, seems a lot to ask.

Fortunately, digital natives won’t be starting from scratch. Knight Chair Rosental Alves and Amy Schmitz Weiss lined up speakers from nearly every continent and they reminded us that the U.S. isn’t the world leader in everything.

Paywalls are a fact of life at 9 newspapers owned by Grupo Reforma in Mexico, for example. In Norway, online ads, apps and premium content sales have boosted online revenue to 30 percent of total earnings for Schibsted.

Closer to home, The Bay Citizen is balanced on what Editor Lisa Frazier called the “three-legged stool” business model. They’ve landed some major foundation grants, they’re hawking NPR-style memberships in the streets of San Francisco, and they’re licensing content to the New York Times.

“If one leg collapses, we’re in trouble,” she said.

She doesn’t pretend to know whether this or other models for so-called nonprofit journalism are sustainable. If the Bay Citizen’s approach is going to fail, Frazier said she hopes it will fail fast. I’ve heard drug company executives say this dozens of times about experimental treatments, but never before an editor.

The ISOJ program mixed research reports from young scholars with presentations by practicing journalists. No matter what was happening in the front of the room, whether the topic was community engagement or the Christian Science Monitor's transition to the web, there was one constant: the tweeting never stopped. By one count, there were 5,187 Twitter posts during this two-day conference.

If we’d been grackles the din would have deafened us all.

We weren’t all using Twitter in the same way, of course. On Twitter we may be lurkers, linkers, predators, spammers, scammers, trawlers, thought leaders, advisors, fixers, or provocateurs, according to peripatetic new media interpreter Madan Rao, who writes about social media for nearly everyone.

No matter where you fit in the taxonomy of Twitter, you may want to make plans to head to Austin next spring for the 13th edition of ISOJ or an even bigger spectacular, http://sxsw.com/interactive

For brisket and blogging, tequila and Twitter, there is truly no place like Texas.

Why I kissed Paul Steiger

It wasn't meant to happen.

But when the chance came, I couldn't resist planting a damp one on the founding editor-and-chief of ProPublica, the non-profit investigative journalism shop that has become a Pulitzer-winning powerhouse in three short years.

Steiger, who spent the first 41 years of his career as a reporter and editor for what he called "profit-making or at least profit-seeking newspapers," the Los Angeles Times and the Wall Street Journal, came to Athens two weeks ago to deliver the prestigious McGill Lecture.

We met earlier in the day, when he and Hank Klibanoff were featured in a McGill Symposium panel called "Non-profit investigative reporting to the rescue?" Klibanoff was managing editor for the Atlanta Journal-Constitution and won the 2007 Pulitzer Prize as co-author of The Race Beat. This past year he left the newsroom for Emory University, where he's now a journalism professor.

These legendary editors spent an hour discussing business and editorial upheavals in journalism, and how these might affect the dozen journalism students seated at the table.

No matter how the news is paid for, Steiger said, reporters are still a news organization's most valuable resource.

The ProPublica team includes a 23-year-old reporter and a 62-year-old Pulitzer winner "and they learn in both directions." Summer internships in his shop pay $700/week, "which in New York is not a lot of money," Steiger said, "but we wanted to pay enough to get kids who aren't rich."

I could hear the synapses firing in those student brains; more than a few were running the math on those intern gigs. Finally a student asked whether if was better for aspiring journalists to train as generalists, or to develop a specialty.

Of course a journalist should be liberally educated, said Steiger, who holds a bachelor's degree in economics from Yale University. But specialization is good and reporters who know how to cover science are especially prized by editors, he declared.

Klibanoff concurred.

At this point Steiger became my very own American Idol. He had voiced two of my own cherished beliefs: journalism interns should be paid for their skills and time and covering science -- which for me includes rigorous reporting on medicine and health -- is a smart career choice.

I hung back when a swirl of well-wishers engulfed the speakers at the session's end. As soon as Steiger stood alone, I rushed over and was surprised to hear myself exclaim: "I could have kissed you when you said that specializing in science is a really good choice for young reporters."

"You can kiss me now," he said, offering his cheek without taking a beat.

And so I did.

(Thanks to Kathleen Raven for the phone of Paul Steiger.)

Present at the creation

Most graduate programs in journalism can’t offer their students a bedside perspective on the birth of a new medical school. But HMJ at UGA is doing just that – and it’s an unprecedented opportunity for reporters training to spend their careers on the health and medicine beat.

Graduate students in the advanced health and medical journalism course are shooting high-definition digital video for a documentary about what happens when a medical school campus opens in a complex, established ecosystem. UGA itself, local hospitals and clinics, and people in need of medical care – all will be affected.

New grad students will pick up the story every year and eventually maybe we’ll have our own version of Nova’s documentaries about Harvard Medical School.

Eight reporters are working three beats: medical students, faculty (at UGA and beyond), and local medical and patient communities. Students in JRMC 7356 will be doing their own stories this semester and storing their interviews in a digital archive. These files will be used by future HMJ graduate students and will be a resource for other scholars who want to look back on the early years of medical education at UGA.

There are only 133 accredited, degree-granting medical schools in the United States, and it’s a big deal when a new school opens or an established one expands. The Medical College of Georgia, based in Augusta, and the University of Georgia launched a new medical partnership in Athens on August 9, adding 40 new slots to MCG’s entering class. The day was sweltering and people never stopped flapping church-style fans printed with the day’s speakers.

The partnership’s mission is to grow more of our own primary care physicians – men and women who will put down roots and flourish in communities that struggle to attract good doctors.

That’s the long-term goal. But already the new medical partnership is enriching scholarship and professional training across the UGA campus. College of Education faculty and med school faculty are combining “current learning science and current medical science” to craft an innovative curriculum that takes advantage of the small class size, Associate Dean Scott Richardson told HMJ students recently.

“Lecture is not a good drug,” Richardson said. “Active engagement is a more effective drug.”

UGA acting students are learning play patients with various complaints, so med students can practice interviewing and basic clinical skills. Partnership students do much of their learning and problem-solving in 8-member teams, although lectures and dissections are required. Athens students cover the same ground as those in Augusta and sit for the same national examinations.

College of Public Health faculty are helping teach classes, some new medical school faculty have joint appointments in basic science departments, and having a medical school on campus will make the university more competitive for more types of research support.

However the story unfolds, HMJ graduate students will be on the scene, toting tripods and compact videocams, gingerly attaching wireless lavalieres to doctors and hospital CEOs, capturing reactions from young people doing their first cadaver dissection.

(Photo by Dot Paul: journalism students meet med students on August 9, 2010, tour with Dr. Scott Richardson.)