Senate File 576 didn’t encounter much trouble in the Iowa Senate. It passed 34-13 with some bipartisan support. But that bill failed to make it through its initial House subcommittee on Wednesday. Representative Joel Fry (R-Osceola) said he’s hopeful a compromise can be reached that addresses all the concerns.
The bill would ensure that the Iowa Department of Public Health will no longer be permitted to collect or otherwise store medical records with identifiable information such as names and social security numbers.
Senator Jake Chapman (R-Adel) ran the bill through the Senate. He said the Iowa Department of Public Health has stored the data for years. IDPH has nearly 80 million individual health records of which roughly 14.2 million records are identifiable by name and/or social security number. The records date back as far as 2005.
“Iowans should not have to worry when going to the hospital what bureaucratic state agency will have access to their identifiable information,” said Sen. Jake Chapman (R-Adel) in his newsletter.
Chapman said at least five state employees can access some or all of the data as well as two individuals who work at the University of Iowa.
But on Wednesday, many interested parties shared concerns with the legislation.
Keith Saunders of the Iowa Board of Regents said there are two centers at the University of Iowa where the bill would be concerning. He said the concerns were centered around removing the identifier of the name of the patient from the stroke registry and also tracking birth defects in the state.
Saunders said it’s important to track patients throughout the various stages to evaluate how the system is working. There are currently 55,000 infant children on the registry.
“Without the name, our ability to identify and track patients would decrease by about 80 percent,” Saunders said. “We would miss about 80 percent of birth defects in Iowa.”
Amy McCoy of the Department of Public Health said the organization is registered undecided on the bill. It impacts two data systems — the EMS and trauma data system and the hospital inpatient and outpatient data system.
McCoy said they’ve talked with the Iowa Hospital Association about getting the inpatient and outpatient data updated without the identifiers. That would cost around $30,000. For EMS, they’re figuring out the details with the software package. A local EMS would have to purchase the software and it would cost them about $5,000 per year. They’ve had 470 EMS services say they use that system for billing as well.
Eric Goranson represents the Iowa EMS Association. He said the organization is not opposed to the idea in the bill, but has declared against the bill because they’ve yet to hear exactly how they’re going to accomplish the goal and get it moving forward.
He encouraged the legislators to be willing to spend a little bit of one-time money to give them the resources necessary to adjust the software and remove personally identifiable information.
“We’d love to disappear on this bill and be undecided and let them fix that problem,” Goranson said. “We just need to know that if this bill passes there is a technical way to do it and there are funds there to get that done.”
Fry asked where the bill was coming from.
“Sen. Chapman has been the driving force in the Senate,” Goranson said. “One or two members here (in the House) are sympathetic to that cause.I think there’s a way to make everyone happy, it just requires everyone put some resources forward.”
Rep. Lisa Heddens (D-Ames) said the money issue wouldn’t address the issue of capturing stroke information.
“The question for you as policymakers is is removing the names to prevent whatever it is that this is aimed to do for privacy protection worth having a less effective stroke registry,” Saunders said.
Heddens said she hadn’t heard of any breeches of privacy from the Department of Public Health in her 17 years at the Capitol.
Fry asked how long the information stays on file. McCoy said there is no deadline for the information to be purged.
“That’s a conversation to have going forward,” she said.
Representative Brian Best (R-Glidden) said he isn’t crazy about the bill.
Heddens said she doesn’t think it is necessary.
“At this point I’m going to hold off and not sign off on the bill,” Fry said.
Fry said he would like to see something put in place where the information is removed from the system.
The question, though, is what should that time period be. Saunders said for some patients, the information is collected throughout their entire life. An example would be someone who has MS.
He also pointed out the registry was created in 2004.
“You would be undoing something you did 15 or 20 years ago,” he said.