Federal request for patient data spurs some hesitation among clinics

Aug. 15, 2012, 3:57 p.m.

A stethoscope hangs at South Central Family Health Center. The federal government is requesting that community health clinics collect and share data on patients' occupations. (José Martinez/OnCentral)

The federal government is asking community health clinics for more information about their patients, and while South L.A. clinics seem to think that's a generally good idea, there is some hesitation.

A letter dated June 20 from the National Institute for Occupational Safety and Health (NIOSH), which is part of the Centers for Disease Control and Prevention (CDC), requests that clinics begin collecting and sharing information about patients' occupations.

Nina Vaccaro, the executive director of the Southside Coalition of Community Health Clinics, says the coalition's eight member clinics already report basic patient demographic information to both the state and federal government: gender, age and ethnicity are a few examples. Fulfilling NIOSH's request would add one more data set to that information – something that clinics are particularly well-equipped to do now that they're making a move toward an electronic health record (EHR).

"As community clinics are starting to implement electronic health records, we know we have a great opportunity to start collecting more data in a more uniform way about our patients and their demographic," she said. "So their recommendation is that we start to collect information about occupations and industries that our patients are working in, so that we have a better understanding of work-related injuries."

Vaccaro said there are "a lot of great reasons" to collect this information, but also a challenge: Clinic staffers are unsure whether this information is going to be publicly reported.

Among the information requested by NIOSH is:

– A patient's employment status
– A patient's current occupation and industry
– A patient's longest-held occupation and industry
– A patient's employer's name and address
– Work-relatedness of a patient's condition

"We want to know how this data is going to be used," explained Vaccaro. "Is it going to be available publicly? While there's value in understanding where our patients work and the type of industries they work in, they also have to be cautious these industries are not going to be targeted."

Jim Mangia, the president and CEO of St. John's Well Child and Family Center – a member clinic of the coalition – echoed that.

"The question, of course, is how it gets collected and how it gets used," he said. "There have to be safeguards in place to protect the confidentiality of the patient and make sure that it doesn't result in immigration issues and other departments of the federal government getting hold of this information and using it to come after our patients in any way."

Jaire Saunders, an intern with the Southside Coalition, says there's another potential disadvantage to providing the government with this data – time. (Or a lack thereof.) Saunders and fellow intern Chloe Green are both UCLA graduate students and have been spearheading a general needs assessment with the clinics in the coalition.

"We've [seen] some common themes, one being that this might cause more time constraints on the providers," Saunders said, explaining that federally-funded community clinic providers already have to ask their patients a certain number of questions, as dictated by the conditions of their government-provided money.

"To have them ask something else, some providers have been a little leery to add more constraints to the time they can spend with their patients," he said.

Saunders added that when it comes to occupational health, that's just not at the top of a clinic's list of priorities – instead, they gear their efforts toward primary care and preventive care. But he said it's just a matter of resources – clinics certainly want to offer this type of care.

But even then, Green explained, only so much can be done. "There's only so much you can do for a patient that has to go back to work the next day," she said. A lot of work-related ailments are preventable, and while doctors "would love to prescribe frequent breaks," they know bosses in low-wage jobs will often take one look at that doctor's note and say no.

"They're sort of between a rock and a hard place," Green said, referring to both patients and doctors.

Still, as far as the Vaccaro and Mangia's hesitation, Green said this is likely information that immigration officials, for example, would have access to anyway. And knowing where these patients work will certainly be beneficial to figuring out treatment and prevention strategies.

"There is something to be gained by getting this data, specifically this population," she said.

Which is why the Southside Coalition is planning on writing a letter of support to NIOSH. Despite their hesitations, both Vaccaro and Mangia stand behind that.

Vaccaro says collecting the information on a federal level could profoundly affect communities at the hyperlocal level, and Mangia says having data on patients' occupational situations is a good idea.

"In some ways community health centers are uniquely qualified to do that," he said. "Because we're seeing low-wage workers, we're seeing the working poor and we're seeing the health conditions that are caused by the conditions in which they live and work."

NIOSH has given community clinics an open comment period where they can submit questions and concerns to the agency through August 27.

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