Connecticut needs a health information exchange. But the state’s current proposal calls for consumers to be defaulted into the exchange unless they affirmatively opt out and the loss of privacy could be too high a price for consumers.

Converting health records from antiquated paper systems to electronic files that can be shared has enormous potential to save lives, improve the quality of health care, reduce duplication of services,  and save money.

E-health initiatives are one of the few health reform proposals that almost everyone agrees with. Providers need up-to-date medical information to deliver the best care.  With e-records, an ER doctor treating an unconscious patient can have the information he needs to provide best treatment.

A critical part of any health information exchange is protecting the privacy and security of that health information. While the doctor treating you needs the information, your neighbor, your employer, or a marketing firm should never see your records. Both Connecticut and federal laws have strong protections to ensure this never happens, especially for sensitive areas such as HIV, mental health and substance abuse treatment.

A health information exchange pilot program will start in July for Connecticut Medicaid clients, connecting a few hospitals, clinics and doctors’ offices.  eHealthCT, the nonprofit group that designed the pilot, has brought together hospitals, doctors, insurers, employers, clinics, pharmacists, labs, and consumers to build the system, and in full disclosure, I am a board member.

eHealthCT consulted with a wide group of legal and technology experts, consumer advocates and providers in a long, public process to develop a strong privacy policy to protect patients’ sensitive information. A critical component of the policy was a requirement that patients sign a form agreeing to share their information in the exchange. Patients are informed of the benefits but have the clear option not to participate. States with similar opt-in policies find that the vast majority of patients sign the form; not surprisingly, most of us sign whatever we are asked to.

Meanwhile, the Connecticut Department of Public Health has spent $1.3 million hiring consultants to develop a privacy policy for a statewide health exchange. Their committee includes no consumers or advocates, and is recommending an opt-out policy that would default all consumers into the system unless they actively opt out.

Such a policy would require patients to know their rights and to navigate the state’s paperwork to decline. More than that, the DPH policy would require doctors and hospitals to edit every entry that goes to the exchange for any legally sensitive information. That would require a review of every prescription to be sure it isn’t a clue to a diagnosis and every doctor’s note for references such as patient depression, or HIV infection. And the doctors’ office or hospital would be liable for any oversight. 

Worse yet, doctors and hospitals are not required to join the exchange. Many may choose not to participate, given the additional workload in reviewing and the new liability, and if doctors and hospitals don’t join the system will fail.

Under the DPH information exchange if there is a breach of privacy the public outcry will be massive, and rightfully so.

But none of this needs to happen. The state has a well-considered privacy policy model from eHealthCT. Consumers probably haven’t heard anything about this.  The public health department held a public comment forum this week, but did little to publicize it. The draft plan is on online for comment, but buried on the state, without this latest recommendation.

The plan will be submitted to the federal government in September; if it isn’t good enough, Connecticut could lose out on over $7 million to build the exchange.

Nothing is more important to our well-being than creating a system that gets health information to the people who need it to save lives, while securing our most private health information from people who shouldn’t have it. The policy the state of Connecticut is considering jeopardizes both.

Ellen Andrews is Executive Director of the CT Health Policy Project, a non-profit research and advocacy organization working to expand coverage to affordable, quality health care for all Connecticut residents. The Project provides policymakers with information about options for coverage and provides assistance to consumers struggling to access health care in Connecticut.