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COVID-19 Data Sharing Pits Privacy Against Public Safety

To date, health authorities here and across the nation have been sparing with data, citing federal and state medical privacy laws to justify withholding any information that might identify an individual patient.

by Katie Fairbanks, The Daily News / July 23, 2020
TNS

(TNS) — Donna MacKenzie, a local registered nurse, and Brenda Rubash, a retired local social worker, are all for protecting the privacy of patients with COVID-19. But they both say they the public needs more information about how and where the disease is spreading.

“Origins and any information on spread is vital to helping keep people safe,” Rubash told The Daily News in an email.

Their sentiments are shared by critics here and across the nation who are frustrated by privacy-driven restrictions on information. The public, they say, needs to know more about where virus cases are breaking out so it can judge whether measures to contain the spread are working and identify who may be flouting the rules and thus prolonging the pandemic.

Complete data is helpful for people to understand what the government knows and why it is imposing certain restrictions, said Michele Earl-Hubbard, vice president of the Washington Coalition for Open Government and media law attorney.

“Just straight up numbers (of cases) isn’t cutting it,” Earl-Hubbard said. “I don’t understand the resistance. I’d think you’d want the public to understand what people are affected (by the virus).”

So far, health authorities here and across the nation have been sparing with data, citing federal and state medical privacy laws to justify withholding any information that might identify an individual patient, directly or indirectly.

In Cowlitz County, the health department releases just the patient’s age range, gender and prevalence of cases by zip code. It has described in general terms where cases have arisen, but authorities have not been specific.

Local health officials add that in most instances more information won’t help the public reduce the risk of exposure. And they worry about profiling, rush to judgment and other concerns if they were to release more information. However, they have been willing to bend the rules a bit, and say they would identify a businesses if an outbreak threatened the general public.

“Public health walks the fine line of figuring out how much does anyone need to know to take the appropriate steps to protect themselves,” said Jeff Sconyers, attorney and lecturer at the University of Washington School of Public Health.

Sconyers said local health officials have a duty to prevent and control the spread of infectious diseases, and a mandate to do so without disclosing the identity of any specific case or suspected case. This often requires providing some information but less than some members of the public might want, he said.

The essential — and complex— question, though, is whether health authorities are interpreting the law too conservatively, and where should the line be drawn between patient privacy and the public’s need to know about the pandemic.

Cowlitz County Health and Human Services, like the state and other local health departments, in most instances is not covered by the 1996 federal Health Insurance Portability and Accountability Act, which prohibits the release of patient information without permission, Earl-Hubbard said. In general, the law, commonly known as HIPAA, dictates what information health care providers and other covered entities can release to health departments but not what the departments can release to the public, she said.

However, state law requires that the departments’ release of information won’t identify a patient, even indirectly. But this means that county health authorities adopt different policies for public disclosure, often based on the size of a county.

Small counties with few cases typically release less information because it’s easier to pick out individual patients in a small population. For example, Wahkiakum County just lists its number of total cases and in press releases typically hasn’t included an age range or gender of infected individuals.

Some large counties, such as King, disclosed case breakdowns by race and ethnicity, as well as by long-term care facility categories. The health department also names long-term care facilities with five or more deaths.

Clark County also has a breakdown of cases in long-term care facilities but doesn’t list the names. Public Health officials there have reported a couple of outbreaks tied to large businesses.

Cowlitz County has only recorded one COVID-19 case related to a nursing home and did not release the name, citing concerns of the patient being identified. The county released information on the April outbreak at the 600-worker Kelso Foster Farms chicken plant, but hasn’t named other businesses with cases.

‘Tool to educate the deniers’

The Washington Coalition for Open Government has received several complaints about agencies not disclosing information about COVID-19 cases or deaths that should be public, Earl-Hubbard said.

In particular, she has fielded complaints of agencies putting up “artificial barriers” when people try to access death data, which is legally subject to public disclosure, she said. Many people have raised concerns about deaths being double counted, if, for example, a patient dies in a county other than the one where they lived, she said.

The value of greater public disclosure, Earl-Hubbard said, is shown by what happened in the early days of the pandemic in Washington. The media linked COVID-19 deaths in the Puget Sound area to nursing homes, which wasn’t a connection the government admitted at first, Earl-Hubbard said. Releasing that information earlier would have helped people decide what precautions to take and better understand the risk of the virus in nursing homes, she said.

Many Cowlitz County residents contacted The Daily News commenting in favor of releasing more information about COVID-19 cases, particularly if cases were tied to a certain location or business.

Donna MacKenzie, a local registered nurse, said agencies need to be careful about revealing too much personal data, especially if it dissuades patients from being forthcoming about their activities.

“However, seeing the prevalence of people in this area that feel the virus is a hoax, or other conspiracy theories, it would be of benefit as an educational tool to those deniers,” she said.

Brenda Rubash said while patients shouldn’t be identified, the public should be informed of the locations of outbreaks and whether they are linked to certain activities.

However, Dr. Steve Krager, Cowlitz County deputy health officer, said that in many cases location information wouldn’t help people decrease their risk. There’s always going to be some risk, but since most interactions in public places are brief, the chance of getting infected is minimal, he said.

For example, if a grocery store clerk is infected, his chance of transmitting it to a customer is low, especially with social distancing, glass barriers and face masks, Krager said.

“I understand people wanting to know, but science tells us it’s really about close contact with people for a long period of time,” Krager said.

The virus spreads mainly from person to person through respiratory droplets, and spread is more likely when people are in close contact with one another (within six feet for more than 15 minutes), according to the Centers of Disease Control and Prevention.

Since it’s highly unlikely an infected person in a public place would spread the virus to others in passing, in most cases the health department wouldn’t release that location to the general public, Krager said.

Earl-Hubbard said state and local departments can’t legally hold back locations of exposures or outbreaks because the information doesn’t fall under the protected category of something that would identify an individual.

Officials don’t have to disclose case information down to the details, such as saying if the infected person was an employee or a customer, but it’s “irresponsible” not to release the date and location of the exposure or outbreak, Earl-Hubbard said.

“There’s not a way to know every person who came in contact with a business,” she said. “Keeping that information a secret doesn’t make sense to me from a public health stance.”

Krager said a lot comes down to public risk and keeping people safe. There’s not necessarily a certain rule or law that outlines what information to release when, although the department does have to avoid identifying patients, he said.

If there’s a reason to believe people were exposed who can’t be reached through contact tracing, then the department would consider releasing the location and time of potential exposure, Krager said.

For example, Clark County Public Health warned of a COVID-19 outbreak at Orchards Bar and Grill in Vancouver and urged people who visited the restaurant between June 19 and 25 to get tested. If a similar outbreak occurred in Cowlitz County, the health department would certainly release that information, Krager said.

The most effective ways for people to prevent transmission is limiting social gatherings and getting tested as quickly as possible if they have symptoms or were potentially exposed, Krager said.

Apart from social gatherings, many cases have been tied to businesses where the virus spreads between workers, Krager said. While the vast majority of businesses are looking out for their workers, some are struggling to make and enforce the necessary policies, he said.

The county health department is not regularly releasing information on outbreaks in businesses, Krager said. For example, it has declined to discuss a surge in cases at the WestRock paper mill that the Daily News reported through unofficial channels.

In late April, the Cowlitz County released information on its investigation of an outbreak at Foster Farms chicken processing plant in Kelso. Krager said the county shared the information — after TDN made inquiries — because it was still figuring out its outbreak response process. In addition, there was high public interest in outbreaks in food processing plants at the time, and officials wanted the public to know it could happen here.

Danger of suppressing information

Krager said while he understands the public’s desire to know about cases and outbreaks at businesses, there wouldn’t likely be any “public health usefulness” in releasing the information. Businesses have also gotten better about notifying their employees of cases and outbreaks, he said. If a business chose to release information about an outbreak, the county would be happy to explain how it’s working with it to address the concerns, he said.

“There’s so much spread happening right now that every business needs to be careful, not just the ones with outbreaks in them,” he said. “Any business can have a worker pick it up somewhere else and bring it in to the facility, and if their infection prevention strategies are not strong in that facility, they have a risk of an outbreak happening.”

Krager acknowledged that releasing the information could add public pressure to a business that isn’t complying with safety rules. However, he said, it could also be “problematic” because of “people making judgments while not knowing everything that’s going on.”

Along with pressure from the health department to follow the rules, the state Department of Labor and Industries also has a lot of enforcement power to make sure businesses are complying with health and safety orders, Krager said. If a business struggles to comply and was grossly keeping workers unsafe or not communicating well with employees, that may be a time when the health department would alert the public, Krager said.

Sconyers, the health attorney, said public reaction to an outbreak at an identified business could cause it to shut down permanently.

“That may be the right consequence, but you don’t want to jump to that in the first place if you have interim steps to protect the public,” he said.

Employees or others may be hesitant to report COVID-19 symptoms or cases related to businesses out of fear they will be shut down, Sconyers said.

The same goes for releasing too much information on individual cases, he said. People could be unwilling to reveal they have symptoms, get tested or cooperate with case investigations in fear of being identified, Sconyers said.

“By disclosing more widely, we could suppress the information we need to protect the community,” he said.

Protecting the identity of those infected with the virus is important because some “really awful” things have happened to people suspected to have the coronavirus, Sconyers said. Especially at the start of the COVID-19 outbreak, Asians and Asian Americans were wrongfully targeted in racist and xenophobic harassment and attacks because the virus was first identified in Wuhan, China.

“People just don’t understand what’s going on, so they lash out at those who they think are responsible for putting them in harm’s way,” Sconyers said. “We have to protect those who have done nothing wrong … and don’t deserve to be punished for getting sick.”

©2020 The Daily News, Distributed by Tribune Content Agency, LLC.

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