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Privacy laws sometimes work against patients and others with legitimate interests in health information. (ProPublica)

When Federal Privacy Laws Protect Hospitals Instead Of Patients

by Charles Ornstein
Jul 24, 2014 (ProPublica)

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In the name of patient privacy, a security guard at a hospital in Springfield, Mo., threatened a mother with jail for trying to take a photograph of her own son.

In the name of patient privacy, a Daytona Beach, Fla., nursing home said it couldn't cooperate with police investigating allegations of a possible rape against one of its residents.

In the name of patient privacy, the U.S. Department of Veterans Affairs allegedly threatened or retaliated against employees who were trying to blow the whistle on agency wrongdoing.

When the federal Health Insurance Portability and Accountability Act passed in 1996, its laudable provisions included preventing patients' medical information from being shared without their consent and other important privacy assurances.

But as a litany of recent examples show, HIPAA, as the law is commonly known, is open to misinterpretation — and sometimes provides cover for health institutions that are protecting their own interests, not patients'.

"Sometimes it's really hard to tell whether people are just genuinely confused or misinformed, or whether they're intentionally obfuscating," said Deven McGraw, partner in the healthcare practice of Manatt, Phelps & Phillips and former director of the Health Privacy Project at the Center for Democracy & Technology.

For example, McGraw said, a frequent health privacy complaint to the U.S. Department of Health and Human Services Office of Civil Rights is that health providers have denied patients access to their medical records, citing HIPAA. In fact, this is one of the law's signature guarantees.

"Often they're told [by hospitals that] HIPAA doesn't allow you to have your records, when the exact opposite is true," McGraw said.

I've seen firsthand how HIPAA can be incorrectly invoked. In 2005, when I was a reporter at the Los Angeles Times, I was asked to help cover a train derailment in Glendale, Calif., by trying to talk to injured patients at local hospitals. Some hospitals refused to help arrange any interviews, citing federal patient privacy laws. Other hospitals were far more accommodating, offering to contact patients and ask if they were willing to talk to a reporter. Some did. It seemed to me that the hospitals that cited HIPAA simply didn't want to ask patients for permission.

The incident at the Missouri hospital, Mercy, began after Mandi Wilson took her son to an audiologist to get his hearing tested, according to the Springfield News-Leader. A security guard questioned her and asked to see her phone to confirm that she had deleted any photos. When she refused, the officer told her that she was "being trespassed for violation of HIPAA" and threatened to send her to jail if she came back, the paper reported.

A hospital spokesperson told the newspaper that it is reviewing how its photo and video policy is being enforced.

The Daytona Beach police chief filed a complaint to the Florida Agency of Health Care Administration saying that, based on HIPAA, "his detectives have been impeded from investigating a possible sexual battery of a 75-year-old resident at a local healthcare facility," the Daytona Beach News-Journal wrote.

Lawyers for the nursing home, Daytona Beach Health and Rehabilitation Center, told the paper that privacy laws prevented them from turning over information without a subpoena. An attorney hired by the home's parent company told the paper he found no evidence of any sexual assault.

The HIPAA issues involving the VA emerged as the department grappled with a scandal in which employees were accused of falsifying records to disguise how long veterans were waiting for appointments, drawing ire from veterans groups and lawmakers and prompting the ouster of senior leaders.

The Washington Post reported that the top lawyer for the American Federation of Government Employees cited several cases in which the VA invoked patient privacy restrictions to "stifle whistleblowers."

"We routinely hear from our members who wish to make disclosures about problems with the patient care system and other conduct within the VA," the union's lawyer wrote in a June letter to the VA's general counsel. "Most are reluctant to do so both because of a history of reprisals by VA management, and because of recent experience with laws designed to protect patients which are instead being used as a sword against employees by VA management."

The letter cited how two employees were unable to get a written HIPAA waiver in order to report information to the Office of Inspector General.

"VA routinely uses HIPAA as an excuse to punish into submission employees who dare to speak out," Rep. Jeff Miller, R-Fla., chairman of the House Committee on Veterans' Affairs, told the Post.

McGraw said that HIPAA has specific allowances for police officers investigating crimes and for whistleblowers sharing information with government authorities.

"You certainly can disclose patient information for health oversight activities, including government oversight over government benefit programs," she said. "You certainly can disclose when a police officer comes and is investigating a crime. ... There are provisions in HIPAA that allow them to make a disclosure about a victim of crime as long as the victim has agreed or they're incapacitated."

What has been your experience with patient privacy? Email ProPublica Charles Ornstein at charles.ornstein@propublica.org to let him know.

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Privacy laws sometimes work against patients and others with legitimate interests in health information. (ProPublica)

Ukraine's Prime Minister Quits After Allies Withdraw From Coalition

by Krishnadev Calamur
Jul 24, 2014 (ProPublica)

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Ukraine's prime minister announced today that he is resigning after two parties said they were withdrawing from the ruling coalition.

"I am announcing my resignation in connect with the collapse of the coalition," Prime Minister Arseniy Yatsenyuk said, adding Parliament could no longer do its work.

The Associated Press adds:

"The nationalist Svoboda party and the Udar party led by former boxer Vitali Klitschko pulled out of the group of legislators that took over after former President Viktor Yanukovich was ousted by protesters seeking closer ties with the European Union. Parliament speaker Oleksandr Turchynov said it was up to Udar and Svoboda to propose a candidate for temporary prime minister to lead the government until early parliamentary elections can be held."

The New York Times adds that it's unclear if Yatsenyuk's announcement was symbolic or if he actually was leaving the government.

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We are all Russian nesting dolls: Our intestines house many bacteria, which house many viruses. These so-called bacteriophages are likely as important for our health as the bacteria they live in. (Lisa Brown for NPR)

Globe-Trotting Virus Hides Inside People's Gut Bacteria

by Michaeleen Doucleff
Jul 24, 2014 (ProPublica)

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New viruses are dime a dozen.

Every few months, we hear about a newly discovered flu virus that's jumped from birds to people somewhere in the world. And the number of viruses identified in bats is "extraordinary and appears to increase almost daily," scientists wrote last year in the journal PLOS Pathogens.

But a virus that has been quietly hiding inside millions of people on three continents — and never noticed before? That doesn't come along often.

Scientists at San Diego State University have discovered what may be the most common and abundant virus in the human gut. And yet, the tiny critter, called crAssphage (oh yes, there's a story behind that name), has eluded researchers' radar for decades.

Here's the cool part: The virus doesn't just hang out in our intestines naked and alone, scientists report Thursday in the journal Nature Communications. Instead, the virus takes up residence inside gut bacteria — specifically inside Bacteroides, a group of microbes that have been linked to obesity and diabetes.

So the system is almost like a Russian nesting doll: The virus lives inside the bacterium, which lives inside our gut.

The new virus doesn't make us sick, but it may be involved in controlling weight through its effect on Bacteroides. "We suspect this virus is very important in regulating the number of these bacteria [the Bacteroides] in the intestine," says computational biologist Robert Edwards, who led the study.

Edwards and his colleagues found the virus in fecal samples from people across the U.S., Europe, Korea and Japan. "But we think the virus is likely found worldwide," he tells Goats and Soda. "We've basically found it in every population we've looked at. If we tested Africans, we think we'd find it in them, too."

Scientists are just starting to learn about all the organisms that live in and on the human body. Collectively, they're called the human microbiome. And there's no question they're important for our health.

So far, most studies have focused on the gut's bacteria — not other microbes there. These bacteria are known to help regulate everything from our weight and immunity to heart health and behavior. One study even found that changes in gut bacteria cause malnutrition in young children in Malawi.

But during all this discussion of microbiomes, there have been billions of tiny elephants in the room: Viruses.

Some scientists estimate that there are a hundred times more virus particles than human cells in the human body (and 10 times more viruses than bacteria). But no one ever talks about viruses. Why? Because they are extremely difficult to study.

The number of viruses known to infect people is remarkably small. And the number known to hang out in our bodies for a long time is even smaller. For instance, there are herpes viruses, which cause painful, recurring blisters. Adenoviruses can set up recurring respiratory infections in people, and papillomavirus causes cervical cancer.

And hepatitis viruses and HIV can silently hide in the body for years.

Beyond these common pathogens, however, the list quickly peters out, although DNA surveys suggest that humans have thousands of viral species in and on us. Most of them likely coexist within our gut in peace and harmony.

To start putting a name and function to some of these quieter organisms, Edwards and his colleagues dug deep into sequencing data from the Human Microbiome Project.

They noticed that a few genes from the same virus kept popping up over and over again. So they painstakingly stitched together the virus' genome inside the computer.

Then the team used that genetic code to search for the virus in fecal samples from people in Europe, Korea and Japan. To their surprise, the virus was strikingly common. It occurred in 75 percent of the 466 samples they analyzed.

And the virus was abundant. About a quarter of the viral genes in the samples belong to crAssphage.

"Given the virus' abundance and how widespread it is, it is probably going to be very important for understanding the ecology of the human gut," says microbiologist Jonathan Eisen, of the University of California, Davis. "And it likely infects a group of organisms [the Bacteroides] thought to be really important for health."

Eisen, who wasn't involved with the study, calls the new virus "really cool" and "worth learning more about." But he says it's too soon to say if it's truly a global virus.

"The samples searched so far have reasonable diversity — they're not just from white men in New England," Eisen says, "But we haven't sampled all of human diversity."

"We desperately need an organized systematic effort to gather information about viruses," Eisen says. He proposes something like the Human Microbiome Project, but for viruses that directly infect humans and viruses that infect the bacteria of the human microbiome.

That point brings us back to the new virus' strange name: crAssphage.

The "phage" part, Edwards says, comes from the name of viruses that infect bacteria — the so-called bacteriophages. And the first part, "crAss," comes from the computational tool that the scientists used to find the virus (Cross Assembly). But we couldn't help but notice the name also brings to mind where the scientists found the virus.

"Oh no, we never thought of that," Edwards says with a chuckle. "We would never be crass."

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Barbed-wire fence surrounding a military area is pictured in the forest near Stare Kiejkuty village, close to Szczytno in northeastern Poland. The CIA ran a secret jail on Polish soil, the European Court of Human Rights ruled Thursday. (Reuters /Landov)

European Court Rules Against Poland In CIA 'Black Sites' Case

by Krishnadev Calamur
Jul 24, 2014 (ProPublica)

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The European Court of Human Rights ruled today that Poland broke the European human rights convention by allowing the CIA to imprison and torture two terrorism suspects in secret prisons on its soil.

"The Court found that Poland had cooperated in the preparation and execution of the CIA rendition, secret detention and interrogation operations on its territory and it ought to have known that by enabling the CIA to detain the applicants on its territory, it was exposing them to a serious risk of treatment contrary to the Convention," the Strasbourg, France-based court said in a statement.

And, it said, "the treatment to which the applicants had been subjected by the CIA during their detention in Poland had amounted to torture."

The Associated Press says the ruling marks the first time any court has passed judgment on the Bush administration's program of extraordinary rendition.

The court ordered Poland to pay Abd al-Rahim al-Nashiri, a Saudi national, $135,000; and Zayn al-Abidin Muhammad Husayn, a Palestinian also known as Abu Zubaydah, $175,000.

Nashiri was charged with allegedly masterminded the deadly attack on the USS Cole in 2000. Abu Zubaydah hasn't formally been charged. Both men are now imprisoned at Guantanamo Bay, but their lawyers had said that between 2002 and 2003 they were held at secret prisons, or "black sites," in Poland. Here's more from The Wall Street Journal:

"Both Messrs. Zubaydah and Nashiri say they were taken to Poland on the same secret rendition plane in Dec. 2002, after having been captured in Pakistan and Dubai, respectively. CIA documents show that the two men were subject to "enhanced interrogation techniques," including waterboarding, during their detention at Stare Kiejkuty, a Polish military base that was first used by the German intelligence service in World War II."

The European court's decision can be appealed, and a spokesman for the Polish Foreign Ministry was quoted in The Journal saying, "We have three months to file an appeal so there is ample time for thorough work of our lawyers. Our concerns over the case were made clear during the proceedings."

But Amrit Singh, a lawyer for Nashiri who works at the Open Society Justice Initiative, said the "ruling is of landmark significance."

In 2012, the European Court of Human Rights ruled against Macedonia in another case involving rendition.

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An employee looks at a Russian foreign passport at the U.S. Embassy in Moscow. (ITAR-TASS/Landov)

U.S. Database Glitch Delays Passport, Visa Processing

Jul 24, 2014 (ProPublica)

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The U.S. State Department's global database for processing visas and passports is experiencing problems that could cause delays for millions of people around the world who are awaiting travel documents.

The Associated Press writes:

"Unspecified glitches in the department's Consular Consolidated Database have resulted in "significant performance issues, including outages" in the processing of applications for passports, visas and reports of Americans born abroad since Saturday, spokeswoman Marie Harf said. She said the problem is worldwide and not specific to any particular country, citizenship document, or visa category."

"'We apologize to applicants and recognize this may cause hardship to applicants waiting on visas and passports. We are working to correct the issue as quickly as possible,' she said."

U.S. official said about 50,000 applications were affected in one country alone.

According to AP: "The database is the State Department's system of record and is used to approve, record and print visas and other documents to ensure that national security checks are conducted on applicants."

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