We need your feedback -- Opt in/out policy option for eHealthCT health information exchange

eHealth Connecticut, a nonprofit organization dedicated to encouraging the secure exchange of health information in our state, is working with DSS to implement a pilot health information exchange for Medicaid patients. As part of that pilot project, the CT Health Policy Project is working with eHealth Connecticut to develop a privacy and security policy for the health information exchange. eHealth Connecticut and the CT Health Policy Project are committed to incorporating the broadest range of public input possible into the policy’s development. We began with a consumer forum at the Capitol April 20th where we collected lots of helpful input. We are now considering a set of policy questions that need to be answered by any privacy policy. Please comment on this blog below or email information@cthealthpolicy.org with your thoughts, ideas or concerns.

Health information exchanges allow providers to work together by electronically connecting to coordinate patients’ care and reduce medical errors. In states with a health information exchange in place, a physician seeing a patient for an unresolved problem can review the workup performed at other physician offices, helping to reduce the burden of repeat testing on the patients and healthcare system. Providers in an ER can gain access to critical information about an unconscious patient through a health information exchange, improving the care they can provide.

The first question in developing the policy is whether to have an opt-in or opt-out policy. In an opt-in system, consumers must affirmatively choose to allow their health information to be shared in the health information exchange. In an opt-out policy, consumers are assumed to have agreed to share their information within current HIPAA guidelines unless they affirmatively choose to opt-out of the system.

The advantage of an opt-in system is that we can presume that every patient made an informed decision to participate. For instance, people who are positive for HIV or have mental health issues can be sure that their information will not be shared unless they agree. However, consumers generally agree to whatever their provider recommends and will usually sign whatever they are asked to at the time of treatment. We also cannot be sure that everyone fully understands their decision and its consequences. Another disadvantage with an opt-in system that requires consumers to fill out a form and mail it out after the point of service, is that, without significant efforts and resources (not available for this project), very few consumers follow through and send in their information even if they have no objection. If only a minority of patients participate in a health information exchange, it is unlikely to become a useful tool for providers, they are less likely to adopt and use the system, and it will not realize its potential to reduce medical errors and improve the quality of health care. Other questions include whether to include all records for Medicaid patients in the health information exchange from the beginning of the project, with or without patient consent allowing consumers to opt-out as they choose, or to begin filling the exchange with information only when patients access care.

Please give us your thoughts on an opt-in vs. and opt-out privacy policy for this project by commenting on this blog or emailing us at information@cthealthpolicy.org.
Ellen Andrews