As Health Information Exchange Launches, Patient Advocates Warn of ‘Subscriptions’ to Private Data

After 15 years of false starts and $43 million dollars spent, Connecticut’s long-awaited health information exchange is finally “open for business,” state officials announced on Monday.

The exchange is expected to collect and share patient data between healthcare providers across the state, which officials say will improve care, reduce redundant testing and lower healthcare costs through efficiency. 

But a funding strategy that charges “subscriptions” for access to that health data has raised privacy concerns for patient advocates who warn of a lack of clarity regarding who will have access to that data.

Ellen Andrews, executive director of the Connecticut Health Policy Project, said she knows of a researcher who wants to access the data for a study looking at potential precursors to suicide. Andrews warned that sharing patient mental health records for research purposes could have a chilling effect on patients sharing information with their doctors.

If family planning records could be accessed, Andrews said, someone could also potentially see if a patient had an abortion or the kind of contraception they are using

“We don’t even know that it will stop there,” Andrews said. “It could go to credit bureaus, it could go to groups that do background checks on people.”

The exchange is run through a nonprofit organization called Connie, which is currently funded entirely by the federal Centers for Medicare and Medicaid Services through the High Tech Act, said Jenn Searls, who serves as executive director of the program. 

That federal funding will expire in September, and Searls said her organization is working with state health officials to transition to an alternate source of funding. Searls said that will likely include federal funding, as well as a subscription model for healthcare providers and insurers to access the data.

Office of Health Strategy Executive Director Vicki Veltri said that the state will contribute about $5 million this year through the Medicaid program.

Asked whether any parties other than healthcare providers and insurers would be able to access patient data in the database, Searls said no.  But Searls said her organization was working toward allowing patient access to their data in the system.

“Access to Connie will be limited to those who have authorized reasons for treatment, payment or operations at this point,” Searls said.

Searls said that  access to researchers is a “potential future use case,” but is not being considered for the near future. Veltri said that researchers already have access to the state’s All-Payer Claims Database, which includes medical, pharmacy and dental claims reported by insurers.

“Any information that’s available in the [health information exchange] has significant restrictions on what could be shared,” Veltri said. “So if there’s a potential research case, it would not be on an individual level – no particular individual’s data would be known to anyone in any kind of case. That kind of information is protected.”

Andrews said those answers did not give her comfort, because statements by Veltri and Searls aren’t enforceable. Andrews also said that there are methods to “re-identify” data, so she’s not sure that Veltri can even promise that individual data won’t be accessible to outside parties.

Andrews said she’d be slightly more comfortable with a funding mechanism that didn’t give insurers and Accountable Care Organizations access to patient data, but that a law restricting the use of the data would be better.

“Why not include that in the legislation if that was the intent?” Andrews said. “Now we know that is not what they intend, they intend for insurers and ACOs to have access, and they’re leaving the door open to others.”

Does “opt out” protect patients?

Given that every hospital, lab and healthcare provider in Connecticut with health records in electronic form is required to share information on the exchange, Andrews warned that anyone who receives treatment in Connecticut would effectively be giving “implied consent” to have their data shared.

To address that concern, Connie allows for patients to “opt out” of data sharing. Patients can opt out of that by filling out an online form; printing out or downloading a form to fax, mail or email to Connie; or calling the exchange to ask to opt out.

Searls said that when a patient opts out, any data in the Connie system will be deleted within five days, and no new data will be entered into the system unless the patient opts back in.

But Andrews warned that opting out isn’t much of a protection. For people to opt out, Andrews said, they would have to know to opt out, and know what they are opting out of. In many cases, Andrews said, patients won’t opt out because they won’t even know that their information is being collected and shared between providers.

“The only thing that’s working in the healthcare world is the doctor-patient relationship – that when you go in and you talk to somebody, you can tell them stuff that you wouldn’t tell your neighbor or even your family,” Andrews said. “That’s how we get healthy, because you know they can’t tell anybody. This takes away that protection.”

Veltri said a patient consent policy has been drafted and recommended to the board of directors, and that public comment on the policy would be open until May 26. Under the draft policy, a customer would need to opt out of providing data to the exchange, except for “sensitive and/or specially protected” information – which a provider cannot disclose through Connie without “affirmative consent” of the patient or their representative.

Why exchange health information?

After three false starts dating to 2007 cost millions of dollars in federal money, Connie is the result of a fourth attempt once expected to be up and running by the start of 2018.

The announcement on Monday means that Connecticut is at last ready to join 45 other states with health information exchanges, ensuring that healthcare providers will be able to access a patient’s health information anywhere in the state, Veltri said. 

“If you typically get care in the northeast corner, but find yourself in need of emergency treatment at the shoreline, you don’t have to worry about your treating physicians not having real-time lists of your medications or health conditions,” Veltri said. 

The announcement also starts the clock for when providers must join the exchange. Licensed hospitals and clinical laboratories must begin the process of connecting to Connie by May 2022, and every health care provider with an electronic health record system must begin connecting by May 2023, according to the Office of Health Strategy.

Dr. Joe Quaranta, an internist and president of Community Medical Group, said on a press call hosted by the Office of Health Strategy on Monday, that Connie will help deliver the highest quality care by making a patient’s full medical history available during treatment.

“Patients deserve the very best care, without the challenges associated with trying to access their medical records across many doctors, hospitals and other providers,” Quaranta said. “Connie will allow doctors to spend less time tracking down records, and more time with their patients.”

Andrews said that while she is concerned about patient privacy — and there are patient advocates who oppose any data sharing — she is not opposed to data sharing or the concept of the health information exchange.

“If I end up in the emergency room unconscious, I want my doctor to know what I’m allergic to,” Andrews said.

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