Flooding the zone

It was mid-March when the first of the UGA health and medical journalism graduate student flew from Atlanta to Reno on a reporting trip. Students in this course do community journalism every year, but that usually means driving 24 miles for an interview, not flying 2,450.

Eight more HMJ students followed, traveling alone or in teams, loaded with computers and video equipment, clutching interview schedules and lists of questions begging to be asked.  

Each was responsible for one aspect of a larger story: can health professionals, businesses and consumers band together to make health care affordable for uninsured people? And can they do this by creating a nonprofit alternative to Medicaid and costly commercial insurance? The students were headed to Reno because this is where a novel program called the Access to Healthcare Network has been successful for more than seven years.

All semester the reporters analyzed the unmet needs of low-wage workers, small businesses, women, people with mental health problems, and those blindsided by emergencies. They learned how hospitals, federally subsidized clinics, nurses and community physicians could partake of a solution.  The final step was planning and executing a reporting trip to Reno.

The photo above shows mental health reporter Alicia Smith, hospital reporter Julianne Wyrick and Jodi Murphy – responsible for the small business beat – leaving UGA for their trip to Nevada.

Field reporting brought all the usual challenges: people who back out of interviews at the last minute, misunderstandings about where video can and cannot be shot, microphones that don’t work, batteries that poop out and motel rooms that are less than swanky.

When they returned to Athens, the nine members of the “Betting on Reno” team scrambled to fill gaps in reporting, struggled with balky editing software, and hectored sources for last-minute clarifications.

When the semester ended and the dust settled, they had produced about 6,000 words of edited, fact-checked copy and nine short videos. This is the kind of ambitious multimedia series that few news organizations are investing in right now

We flooded the zone because the story is important. The Access to Healthcare model works, and it fills a gap that is not going to disappear with the Affordable Care Act. Within the coming year, 5,000 people in the Athens area will be deciding whether joining a local version of the Reno plan makes sense for them.

The student reporters set out unearth everything they could to help Athenians make wise decisions.

Georgia Health News began running the “Betting on Reno” series on May 13 and will publish new stories every Monday and Thursday through June 10. This is serious journalism: no fluff, no handwringing or partisan ranting, real stories about real people who are sharing responsibility for the good of their community.

Dip into the series and you’ll discover that the Access to Healthcare Network is less like standard health insurance and more like a warehouse buyers’ club: a modest membership fee gives people access to participating doctors and hospitals at deeply discounted rates.

You won’t have to read far to learn that in early 2014, uninsured Athens-area residents who fit a certain description will become the first people outside Nevada who can purchase health and medical services this way.

And you’ll realize that the “individual mandate” provision of the Affordable Care Act doesn’t apply to people who can’t afford the cheapest plan on the state health exchange. For these people, a medical discount plan might be their best shot at care they can afford.

Is this the “teaching hospital” model for journalism education?

Eric Newton of the Knight Foundation, along with other foundation executives engaged with journalism schools, stirred the pot last August by calling on schools to adopt a "teaching hospital" model for training tomorrow’s journalists. He advocated embedding big name national news people in J-schools where they would lead student investigations of major topics, generating stories suitable for national distribution.  The News21 projects are good examples of this.

“Betting on Reno” is different. It is more like a neighborhood satellite clinic associated with a teaching hospital. As a Knight Chair, my purpose is to be a practitioner in a sea of scholars. But I’ve been swimming here for seven years now. Andy Miller, CEO and founder of Georgia Health News and our prime media partner for health journalism, more closely resembles the working journalists Eric Newton had in mind. The teaching hospital approach wasn’t practical for “Betting on Reno,” however, because Miller could not step away from his daily news operation to spend a semester in residence at UGA.

So I ran the course and Andy joined in at crucial points: helping the students determine whether they had marshaled the right datasets for their beats, providing political and historical context, and ultimately making thumbs up or thumbs down decisions about publishing their stories.

The third key member of the editorial brain trust is independent writer and editor Sonya Collins, an HMJ graduate who runs her own Atlanta-based business. She worked closely with every writer, asking hard questions and helping make the prose a pleasure to read. Together the three of us shaped the finished series.    

So whether you think this qualifies as a teaching hospital story or not, the “Betting on Reno” series clearly demonstrates that collaborations between academic institutions and professional news organizations can deliver genuine public service journalism – empowering users and delving deeply into stories that otherwise would be told superficially, if at all.

The future of health care is where?

Students who sign up for JRMC 7355, the first of a two-part sequence in health and medical journalism, never quite know what to expect.

Back in 2007, the capstone project was a reporting trip to post-Katrina New Orleans, focused on neighborhood medical homes. Subsequent groups of students have covered the American College of Cardiology and the American Academy of Pediatrics, as well as national gatherings of state and municipal emergency officials and forensic scientists (amazing slides!).

If there is such a thing as a typical year, it involves setting up shop in an outlying North Georgia county and working as a one-person news bureau, digging out news and features related to public health, medicine, the business of healthcare and environmental risks. Teen pregnancy, hospitals up for sale, special drug courts, occupational hazards of granite finishing, even parents who help their kids get drunk. It's all there.

Many of these stories have been published by professional news organizations and you can find these -- and more -- here.

This year students got an even bigger surprise: they are traveling across the country to Reno, NV, to report, writing and produce multimedia stories with national implications.

In fact, we're hoping that some of our friends at AHCJ13 will help roll out these stories nationally over the next six weeks or so.

Here are the basics:

Last summer, the Athens Health Network, a coalition of providers serving uninsured people in the Athens area, voted to establish a system resembling concierge care not for the rich, but for people who build houses, prepare food, play music or care for old folks.

This would dramatically strengthen the safety net for Athens, where about 30 percent of 115,000 residents live in poverty but fall through the cracks of the health care system because they are not eligible for Medicaid and work at jobs with no health benefits.

This model works like Sam's Club: you pay a membership fee and then purchase what you need at deeply discounted prices. In Nevada, a mother with one child (up to age 19) earning between 100 and 199 percent of the federal poverty level would pay $45/month for membership. She would pay $40 for a regular primary care visit, and if hospitalized would be charged $400/day. She would pay $70 to have a wound stitched up at an urgent care center.

This approach, often called a nonprofit medical discount plan, has been operating for the past seven years in Reno, Nevada. Hospitals, clinics, doctors, mental health providers, dentists and vision specialists, public health officials, financial institutions and advocacy groups have joined forces to make preventive health services and acute care available to uninsured working people. Communities throughout Nevada have since adopted the shared-responsibility model for health care and there is evidence that it improves health outcomes and reduces inappropriate care, such as ER visits for non-emergency conditions.

Athens is the first community outside Nevada that has committed to replicating this model.

The challenge for this year's JRMC 7355 students is to document what happens when a group of adventurous healthcare providers see something they like -- all the way across the country in a city glittering with casinos -- and tries to bring it back home.

Is it crazy to think that a desert creature from Nevada can be born again in a state not noted for embracing change?

The reporters are going to find out. They spent the first half of the semester covering problems that the new plan might help solve: low-wage workers and small businesses with no coverage, local hospitals and doctors going unpaid, overburdened mental health services, free clinics struggling for funds and many more.

Now begins their adventure in time travel: whatever difficulties arise in Athens, whatever the objections of local doctors or the worries of hospital administrators, chances are that Reno or other Nevada communities have faced something similar. And dealt with it. Or not.

Armed with database research, notebooks and video cameras, most of the UGA students who'll be at AHCJ this week are already holding E-tickets to Reno. If you have advice, please share it.

Because in just a few weeks, they'll be back from the future.

Summer love

As autumn approaches, I catch myself daydreaming about two summer loves.

They could not be more different. One burned hot and consumed my days and nights but was over in a week. The other flared up in hotel rooms and borrowed houses from Athens to Boston and took more than a month to unfold.

Baseball and cancer.

America’s pastime and America’s most feared disease. Each is mythic in proportion, freighted with symbolism, and inextricable from everyday life. Given that both books tell stories about joyous victories and crushing defeats, perhaps my love for The Art of Fielding and The Emperor of All Maladies makes sense after all.

As dozens of reviewers have noted since Chad Harbach’s first novel was released last fall, you don’t have to be a baseball fan to enjoy The Art of Fielding. I like baseball and this book dramatically increased my appreciation for shortstops and catchers, but I was captivated by so much else. 

Harbach perfectly captures the incestuous atmosphere of a tiny college in the rural Midwest: love blooms and gossip spreads, slights are magnified, drama plays out in the town’s one decent restaurant, and sexual attraction breaches the boundary between faculty and students and love floods in. I spent two years at a clone of Westish College, and all this really happens.

And then there is the vigor of the story, which rips along like an early John Irving novel. Irving seasoned The Cider House Rules with references to Dickens; Harbach weaves Melville into The Art of Fielding. And like authors of old, neither Irving nor Harbach shies away from coincidence, sudden revelation, or melodrama. It’s all part of a big juicy package of joyful reading that also includes moments of defeat, a death, and a large shaggy dog near the end.

There are no large shaggy dogs in Siddhartha Mukherjee’s  epic history of cancer, The Emperor of All Maladies. The hardback was released in 2010, was named to every annual “Top Ten” or “Best Book” list you can imagine, and won a Pulitzer Prize for nonfiction.  The splash reminded me of Stephen Hawking’s 1988 blockbuster, A Brief History of Time. That book sold millions of copies and graced coffee tables everywhere, yet almost no one read it.

When I talked to people this summer about Emperor of All Maladies, the prevailing response was “I started that book. It was good.” I suspect readers put this book aside because it lacks the narrative arc of non-fiction classics such as Ann Fadiman’s The Spirit Catches You and You Fall Down, or Rebecca Skloot’s The Immortal Life of Henrietta Lacks.

It reads more like a fat collection of linked short stories than a novel. But what stories these are! Mukherjee reanimates the Persian Queen who (looking back on it) had ghastly breast cancer in 500 B.C., the struggles of legendary physicians like Galen and Hippocrates to understand malignancy long before anyone knew there were cells, and some appalling experiments on unwitting patients in the 20^th Century.

Most readers don’t know about the vast gulf between practicing doctors and basic science researchers that persisted from the 1950s until the early years of this century.  While future Nobel laureates such as Peyton Rous, David Baltimore, and Harold Varmus and Michael Bishop nailed down cancer-causing viruses and human genes, patients were subjected to often arbitrary combinations of harsh, sometimes lethal,  chemotherapy agents.

The “human rumor viruses” that doctors once scoffed at are now a fact: consider liver cancer caused by hepatitis B or C, cervical cancer due to HPV, and the host of HIV-related malignancies. And now cutting edge treatment involves genetic profiling of cancer cells and a growing number of treatments designed to block specific genes.

 Some of Mukherjee’s best stories captures the personalities, quirks, and relentlessness of researchers who are closing the gap between what science knows and what doctors can do to help individual patients.

These vivid episodes are perfect for an overnight hotel stay or an afternoon in a porch swing overlooking the ocean. I’m not sorry that this is how my summer fling with The Emperor of All Maladies worked out. It was for the best.

I did quit you, baby

By now you’ve surely seen some of CDC’s new anti-smoking ads: the bald woman draping a scarf to cover her tracheotomy, the guy trying to avoid shaving the scar tissue around his stoma. Graphic stuff, these ads, touted by CDC as a way to motivate hundreds of thousands of people to quit. Supposedly 50,000 deaths will be prevented each year.

And maybe that’s right.

But as a former smoker, I can tell you that scary pictures did not make me quit.

I gravitated toward medical journalism early in my career, so I did more than read the constant flow of reports documenting the lethal and disfiguring effects of tobacco use. I wrote those stories. At dozens of scientific conferences I heard researchers catalog the ravages of smoking and saw blackened lungs splayed out on autopsy tables, projected onto screens the size of a two-car garage.

And then I’d stepped outside convention centers in Anaheim or Miami or New Orleans and lit a cigarette.

I loved smoking. It soothed me when I was anxious and picked me up when I was tired. Smoking was a way to put off doing something and a reward for actually doing it.

Sharing cigarettes was a social act, lighting them could be a form of flirtation, and excusing oneself to search for smokes ended many an awkward conversation. Plus nifty paraphernalia was involved: stylish cigarette cases, high-tech lighters, and ashtrays lifted from the best restaurants and hotels.

It was all smoke and no mirrors back then. I imagined that cigarettes might kill other people, but not me. Other people would develop fine lines around their eyes and stained fingers, but not me. All those doctors I interviewed couldn’t smell it on me or hear me inhaling over the phone.

Living in the South, as I did for much of my smoking life, no one questioned the right to smoke. Back then we smoked in movie theaters and while traveling in cars with babies. We smoked in medical offices and hospital rooms. I would walk off the tennis court after a match and light up.

Ominous warnings on cigarette packs made no difference. Heart and lung association billboards mattered not. I didn’t care that one of the cowboys from the Marlboro ads had lung cancer (or maybe two). Smoking seemed like a social affection that made one cooler and more chic, much like having balsamic vinegar in the kitchen.

And then I moved to Boston for a science writing fellowship at MIT, which also enabled me to take courses at Harvard. No sooner did I arrive in Cambridge than both schools banned indoor smoking on their campuses. Suddenly I was standing on the loading dock outside my MIT office building, learning to screen the lighter’s flame in driving snow.

Pretty soon “no smoking” signs proliferated in restaurants and businesses of all stripes. People moved away from smokers at the bus and train stops. Non-smoking friends who once supplied ashtrays at parties stopped doing it. Go outside, they said, because we don’t allow people to smoke inside. Not anymore.

People I knew and respected, and those I aspired to meet, no longer smoked. They found it smelly and stupid. When people advertised for dates in personal ads, which were just beginning to become respectable, smoking was often a deal-breaker. No smokers need apply.

Social pressure accomplished what anti-smoking campaigns and pathology slides never did: it made me want to stop.

Every time I got close, down to a handful of cigarettes a day, there was an excuse to backslide: my father was diagnosed with Alzheimer’s disease, the publication I worked for was sold, a relationship ended badly, I bought my first house.

But the desire to quit was there and ultimately a bad case of flu did the trick. I was too sick to heat up a can of soup, too sick to walk the dog, and too sick to smoke. For five days. And when trash pickup day rolled around, I dragged myself into the kitchen, took the carton of Marlboros off the top of the fridge, and tiptoed out to the curbside can in my bedroom slippers.

I put the carton in the can. It was March 1989, 23 years ago this month, and giving up smoking remains the single hardest thing I’ve ever done. I ate so many carrot sticks that I turned orange and chewed toothpicks like a woodchuck. I also learned that the intense craving for a smoke lasted less than 30 seconds, and if I could get through that I would be OK.

For years I had a repeated nightmare where I would take one drag and immediately be back in the grip of a two-pack a day habit.

In fact, I’ve never touched a cigarette since that March morning.

If CDC’s new anti-smoking ads can bring someone else to that point, more power to them.

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.