Take charge of your health information

Health information is highly personal, and patients are sensitive about how theirs is used.  One in eight people admits to knowingly withholding information from a health care provider because of privacy concerns—a statistic that hasn't changed much in the past 15 years. This is a serious problem because incomplete records call the integrity of the entire health care system into question.

Control over one's health information is a fundamental right.  The Health Insurance Portability and Accountability Act, better known as HIPAA, has become a household acronym representing health privacy, but few people know how it actually works.  Passed in 1996, HIPAA is a federal law that dictates how providers can use a patient's health information.  It allows for disclosures for the broad categories of treatment, payment, and health care operations.  But, it also guarantees certain safeguards.  HIPAA forces providers to give patients a Notice of Privacy Practices, outlining how their health information can be used and how it is protected.  If providers violate HIPAA, they can be subject to civil fines and even to criminal prosecution.

Recent changes in the law will give patients more control over their medical records in two ways—they will be guaranteed the right to access them and the right to restrict their content.

Currently, patients can request a paper copy of their records, although 40% of patients have never done so.  In part, this is because the request can take up to 30 days to fulfill, and the result can be a hodgepodge of paperwork that makes little sense.  Corrections to the record can be requested, but again, the paperwork is cumbersome and turnaround can be slow.

That situation is destined to change as electronic health records become integrated in health care settings. This transition is governed by the Health Information Technology for Economic and Clinical Health Act (HITECH), passed as part of the federal financial stimulus in 2009.  That law created an incentive program to encourage providers to adopt electronic records, and it will impose penalties on those who don't by 2015.

The standards for electronic records are being introduced in stages. Stage 1, already in effect, requires that patients be allowed to access and download their updated record within a few days of an appointment.  In 2014, Stage 2 will allow patients to directly message their providers, access educational materials, and receive reminders of appointments and medications.  The final stage, Stage 3, is set to take effect in 2016, but has yet to be fully defined.  The goal is to ultimately make the process as streamlined and accessible as electronic banking.

The HITECH Act also made several changes to the HIPAA law to enhance patients' control over their health information.  Starting on September 23, if a patient pays for a service out of pocket, providers have to honor requests to withhold that information from the patient's health plan.

If you are concerned about the privacy of your health information, you should discuss such restrictions with your providers because of the complicated nature of medical records and medical billing.  For example, a patient who wishes to conceal a diagnosis of diabetes may pay for an appointment with a specialist out of pocket to keep it from an insurance company while also using insurance to obtain insulin or test strips. Even without disclosure of the diagnosis, the patient's record clearly indicates the underlying condition. Similarly, if a patient does not make a promised payment, a provider can attempt to obtain it through the patient's insurance, thereby overriding the restriction.

It will take some time for providers and patients to adjust to the changing nature of health records and to the new legal rules that govern them.  But, in the long run, the changes should inspire more confidence in the health care system and empower patients to take control of their health information.  That should lead to more honest discussions with providers, which, in turn, will lead to better health care.