CTNJ op-ed: Privacy and trust concerns at CT’s APCD

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Advocates are raising concerns about the privacy of sensitive medical records at Access Health Analytics, our state’s all-payer claims database (APCD). At the CT Health Policy Projects we have been great supporters of an APCD for CT knowing that, if done well, it could be a powerful tool to give consumers information about the cost and quality of care. It can also assist policymakers in smarter health care planning – directing resources exactly where needed and following up by evaluating if they worked as planned. So we were very disappointed by Access Health Analytics’s decision not to give CT residents the option to control where our health information goes — not only because it denies basic rights but it also undermines the integrity and support for the APCD.

Rhode Island made a different, very patient-centered decision for their database that started this month. They included an opt-out provision, trusting consumers to trust them. And by all accounts it is working well. After hearing about strong security and privacy protections, many Rhode Island callers decide not to opt-out. State officials expect at least 98.5% of residents’ records to be in the system.

Access Health Analytics was asked to consider including an opt-out provision like Rhode Island’s in our state’s APCD but refused. Fortunately this does not have to be the end of the process. The decision is not in law (state law is silent on the issue) but was voted by an appointed advisory committee in obscure meetings in response to an Access Health Analytics staff recommendation. And there is time to fix this – the APCD is still in development, no changes have to be made to do it right. Access Health Analytics need to trust CT consumers if they expect us to trust them.