Five cool things I learned last week

What’s even better than digging through the latest physicians' disciplinary records or touring a new cancer laboratory?

Spending a few days out of the newsroom, attending a health care conference to learn what's new on the horizon. 

Last Wednesday, I drove to Cleveland for a four-day conference sponsored by the Association of Health Care Journalists. It featured dozens of topics and sessions, from concussions to organ transplants.

On Sunday, I drove back to Indy with a backpack stuffed with handouts, business cards, tip sheets and scribbled notes.

Now it’s my turn to share with you. Here are five interesting things (out of maybe 500) I learned at the conference.

FIRST: Consumer ratings for doctors and hospitals have come a long way.

It wasn’t always so easy to find reliable health data to help readers get good care. Decades ago, Consumers Checkbook, a magazine that rates everything from doctors to landscapers, would survey clergymen for tips about the best and worst nursing homes, and would buttonhole ambulance drivers about waiting times in emergency rooms.

“We used whatever we could,” said Robert Krughoff, the magazine's founder and president, and a panelist at the conference.

These days, his magazine (and website now) uses data that hospitals submit to Medicare. His ratings for health plans uses the Medical Expenditure Panel Survey of the Agency for Healthcare Research and Quality, among other things. (For more about this "obsessive consumer activist," read this Washington Post profile.)

Likewise, Consumer Reports' hospital ratings uses data from the Centers for Medicare and Medicaid Services, the Centers for Disease Control and Prevention, state inpatient databases, and the American Hospital Association to build its extensive ratings. Its methodology is here.

ProPublica, a not-for-profit investigative news organization, crunches data left, right, upside down and inside out to build its Surgeon’s Scorecard, which is a tally of surgical death and complication rates. To build the scorecard, the organization acquired Medicare billing records for in-patient hospitals from 2009 through 2013 and consulted with two dozen physicians to help analyze all the information. Read more about that here.

Bottom line: There's a ton of data that goes into these rankings. And journalists and consumer groups constantly push the government to release more and more health information, saying it keeps providers accountable and transparent.

SECOND: Organ transplants are a huge, complex, uncertain business.

If you’re on the waiting list for a kidney, you might wait seven years for a transplant in Chicago, but less than two years in nearby Madison, Wisconsin.

Why? The nation’s transplant system is wildly inconsistent. So where you live and whether you can travel determines a lot about whether you can get an organ, according to a panel of surgeons and journalists.

This was a fascinating session, for a few reasons. First, one of the nation's largest transplant centers is right here, at Indiana University Health. And its top surgeon, Dr. Joseph Tector, made news last week when he quit to take a job the University of Alabama at Birmingham, blasting IU Health on the way out the door.

But beyond that, organ transplants are a mix of intricate surgery, big business and uneven policy. Transplant surgeons from the Cleveland Clinic and Hartford Hospital explained how to dig into national ratings and data to find the best transplant centers for a variety of procedures.

Here are a few interesting resources on this topic:

A)      A meaty, readable newspaper series published last year by the Wisconsin State Journal, showing how the transplant network works, and how geographic disparities can mean life or death, depending on where you live.

B)     A national database compiled by the Organ Procurement and Transplantation Network, showing national figures on the candidate waiting list, organ donation and matching, and transplantation.

C)   Another cool database compiled by the United Network for Organ Sharing, showing trends, facts and figures.

THIRD: Everyone talks about patient privacy, but does anyone enforce it?

Normally, journalists hate roadblocks to information. And for health journalists, one of the biggest roadblocks is the Health Insurance Portability and Accountability Act (HIPAA), which regulates the disclosure of certain patient information by health providers and health plans.

But in an age of smartphones, social media and reality TV, there's plenty of egregious violations of patient privacy, and that's a story too. In nursing homes, hospitals and drug stores, workers can be careless with patient information, or even brazen about oversharing with friends on Facebook when a patient is having a rough day.

To my surprise, I learned the federal government rarely imposes sanctions on violators. Indianapolis attorney Neal Eggeson specializes in patient privacy cases, and was a panelist at the conference. He blasted the law for not doing more to protect patients.

Check out this interview he did last year with National Public Radio, and how he tries to protect his clients, despite the odds.

Also, check out this report and this database from ProPublica on HIPAA violations.

FOURTH: The U.S. surgeon general is really an admiral.

When Dr. Vivek H. Murthy goes out in public in his dark military uniform, some people think he’s on his way to the airport.

"At least once a week, I get mistaken for an American Airlines pilot,” said Dr. Murthy, who holds the rank of vice admiral in the U.S. Public Health Service Commissioned Corps, a group of more than 6,000 uniformed health officers who promote health and safety.

Dr. Murthy, an internal medicine physician appointed by President Obama, attended the conference and laid out his goals during a 20-minute keynote speech.

At the top of the list: increasing public attention to the nation’s prescription painkiller and heroin epidemic (another big problem in Indiana) the way his predecessors focused on smoking and HIV.

He plans to release this year the first surgeon general's report on substance abuse disorders and addiction. (Read more here and here.)

FIFTH: It's not just you: Surprise medical bills are sweeping the nation.

Sure, you hate co-pays and deductibles when you visit the doctor. But consumer out-of-pocket spending represents less than 15 percent of national health spending.

Still, when you get hit with a big bill—especially when you thought you were following the rules, staying in the network and shopping for the best price — it can be devastating.

Consider the horror story of Claudia Knafo, a concert pianist from New York who needed spinal surgery.

She researched which surgeon to choose, and used one at her hospital, who was listed on her insurance plan. But after the surgery, the insurance company told her that the doctor had dropped her plan a few years ago. She received a bill for $101,000, and her insurance paid only $3,500.

According to the New York Times, Knafo considered bankruptcy and divorce before the state attorney general and interceded and she was let off the hook.

Still, too many of these types of stories pop up, said a panel of consumer activists and insurance directors. But they admitted there's very little that can be done to protect many patients, and it might take an act of Congress before more protections are spelled out in the law.

So that's my list of five things.

But I'm still going through my notes and handouts. Check back in a week or two. I might have another list.