This is a guest post from AHCJ member Rose Hoban, R.N., M.P.H.
What kind of information are public health officials obligated to provide to members of the public during an epidemic?
That was the theme of a panel this month at the third Public Health Law Conference in Atlanta with the theme of “Informing the Public While Protecting Privacy.”
I was asked to be part of the panel as a result of my participation in a collaborative effort between members of AHCJ and the leaders of the Association of State and Territorial Health Officers and the National Association of County and City Health Officials, several state health directors, and representatives from federal agencies in 2010.
During that effort, we sat down to talk about creation of guidance for communicating during crises such as the H1N1 outbreak that took place in 2009-10.
I presented that guidance and the context of its creation to a room of about 40 attorneys who practice in the public health space. I acknowledged the difficulty public health officials have walking the line between giving journalists enough information to report effectively while allowing them to feel confident they’re protecting privacy. I also reassured them that by following the guidance, they’d be able to do both.
Also on the panel was Khaled El Emam, a professor of informatics from the University of Ottawa, who runs the Electronic Health Information Lab.
El Emam talked about his research in de-identifying personal identifying information in large databases, and the surprising ease with which one can glean personal information about an individual even within a large database.
He presented a tool developed by the lab that calculates the probability of an individual being identified in a given population. Although the tool is intended for scientists who need to protect privacy in their research, it’s useful for journalists to share with public health officials to help them gauge their risk of revealing identifying information.
For example, I was able to determine that, if in North Carolina, I have a person’s gender, age in years, and four digits in their ZIP code (their region), the probability of successfully identifying that individual is less than 0.5 percent.
El Emam said the tool is based on 2000 census data, but he has plans to update it with 2010 data.
Lead attorneys from public health agencies in Tennessee, Michigan, Oregon and Kansas all approached me after my presentation to ask more details about the guidance.
Jane Young, an attorney from Tennessee Department of Health, shared the challenges she and her office have had in protecting patient information as they have dealt with the ongoing meningitis outbreak linked to injectable steroids from the NECC compounding pharmacy in Massachusetts (a physician from Vanderbilt Hospital in Nashville identified the index case). She talked about her discomfort with the guidance, saying she felt like there might be too much information that could be released.
However, other states’ attorneys disagreed.
“From my perspective, everything you said falls within the purview of [HIPAA],” an attorney who identified himself as being from Michigan told me. “Especially if you use regions to identify where someone is from, that should be no problem to maintain confidentiality.”
I included a link to the guidance in my presentation, and a number of attorneys asked for more information. Some mentioned they were relatively new to their jobs and they didn’t know about the guidance.
“There’s high turnover in government, so even if you have educated one health director or one health department lawyer, two years later there might be someone else new in the job,” said Felice Freyer, co-chair of AHCJ’s Right to Know Committee.
“The guidance could easily get forgotten and left on a shelf somewhere, so we want to be sure that health officials around the country are aware of these guidelines,” Freyer said. “It’s an ongoing task to keep people aware.”
Freyer said when reporters run into difficulties getting information from health officials, they shouldn’t hesitate to share links to the guidance with their health officials.
“It’s not just the rules about how to balance privacy with public information, the guidance starts out with a statement of principles that it’s part of the public health mission to be transparent,” Freyer said. “So just having those principles laid out that clearly can help people. They articulate how it’s to their advantage to be open, and that this is how you maintain the public’s trust.”
“That makes the difference as much as the actual guidelines themselves,” she said.