Public comment to the Office of Health Strategy about the state’s planned Health Information Exchange raised concerns, including those regarding privacy and selling/monetizing the data shared in the advocates letter. Connecticut’s three legal services agencies sent a letter with similar concerns on Friday. Advocates’ concerns were raised by members at last week’s online Health IT Advisory Council meeting. An OHS representative said they are framing a response.
In public comment, the CT Hospital Association raised concerns about the potential to confuse consumers, that it should be “made obvious” to consumers if patient information will be shared beyond patients and their providers, and that most state agencies are not subject to HIPAA privacy protections (DSS is an exception). “Explaining that the HIE will advance the ability of providers to share data with each other and with patients is important, but even more essential is building trust with consumers and patients by being openly transparent about other uses, including how the state will use the data.”
In comment, a legislative staffer stated that it was never intended that insurers have “direct/unfettered” access to patient data in the HIE nor does she believe the statute allows it. She said that the HIE was designed for patients and providers, not for insurers.
In comments, several advocates repeated concerns that our personal information will be entering the system because hospitals and doctors are required by law to participate in the HIE before we have the opportunity to consent or not, that insurers and ACOs will have access to our personal information that could be used to deny care or cherry-pick patients as has happened in the past, that the process to develop the HIE has not been transparent or representative of Connecticut’s consumer diversity, and questioning whether the state HIE will add value to what already exists in Connecticut and is not worth the risks.
In comments, a patient advocate is concerned that the guidelines commit to lowering administrative burdens for providers but not for patients.