Electronic Permanence: Changing records and releases

On September 22, 2011, I attended a webinar sponsored by the Business Operations for Behavioral Health Collaborative, a SAMHSA-funded joint venture of the National Council for Community Behavioral Healthcare, the National Association of Community Health Centers, NIATx, and the State Associations of Addictions Services (SAAS). The topic of the webinar was Health Information Exchange and Behavioral Health.

This is an area that has interested and concerned me for quite a while. As developers of software for behavioral health providers, SOS has for years been monitoring developments in the arena of Health Information Exchange (HIE). This is the method by which Electronic Medical Record (EMR) software will exchange information among providers and healthcare organizations. The HIE is both the process of exchanging information and any repository of that information for easy access by those with rights to the data.

This is the bugaboo that has always bothered me as well as my colleagues in the behavioral health software trade association to which we belong (Software and Technology Vendors Association). SATVA members are committed to assuring that our products share information only as the law allows and as consumers wish.

Work is currently in progress to assure that a universal method of acquiring patient permission for release of their information is part of any HIE. Such a method would undoubtedly allow a patient to specify providers to whom their treatment and diagnosis information can be released and any providers to whom it cannot be released. But what happens when a patient changes their mind?

Here’s a hypothetical example that jumps into the future by a few years, when all or most healthcare providers have EMRs and are connected into their regional HIEs.

John D. is admitted to the Emergency Room of a local hospital after a panic attack that he interprets as a heart attack. Among the papers that he signs is a release for the ER to access any information in the regional HIE about his health conditions. Since he is not thinking very clearly as he is sure he is dying from a heart attack, he signs everything put in front of him. After he is medicated, stabilized and sent home, he wonders about what he signed and which of his health information will now be available to whom. Does he really want his optometrist to know that he was treated with an anti-anxiety medication and prescribed an antidepressant (which he decided not to take)? Is it necessary for his urologist to have this information? What does he do to protect just that ER visit information and keep it from being sent on to other providers?

And what do our mental health and substance abuse patients do to secure their sensitive information?

This process concerns me because of my experience that once a piece of information has been entered into some large electronic database, getting it out may be near to impossible. Several years ago, I attended a conference in New Jersey. I rented a car, drove to the city in which the conference was held, returned the car and paid my bill in a timely fashion, and returned home.

The next time I needed to rent a car was three months after Katrina flooded New Orleans when my mother and I returned to check on her home and attend the funeral of one of my uncles. For some reason, the car was reserved in my mother’s name…the airline tickets were purchased with her card…even though I had placed my name on everything. The rental agency manager noticed something wrong when we picked up the car; there was a block on my account even though there was no balance. She overrode the block, gave me the keys to the car, and we were on our way. I did not give it another thought.

In several return visits to New Orleans, I again rented cars from the same company and always wound up with a car, not even knowing there continued to be a block on my account. Each time the agent or manager overrode the hold and gave me the keys. In November 2010, we arrived in New Orleans on a Sunday. The agent and assistant manager decided they did not have the authority to override the block on my account and there was no one they could contact to clear it. They refused to rent a car to me and offered no solution. They gave me a phone number I could call on Monday, but did not even offer my 90 year old mother and me transportation to another agency. I cursed and swore I would never rent from their unprofessional agency again and called my brother to come pick us up. Fortunately, he was thinking clearly enough to suggest that we go across the highway to a different company and rent a car there.

I did call the company the next day and eventually got the written apology and clearance of my account that I requested. It took six years for this correction of an error to happen.

What processes will we insist be put in place to assure that patients can change their minds about release of information or correct errors or enter corrected information into their records? What kind of advocacy will be required? What do mental health and substance abuse providers need to do to assure that the privacy of their patients’ sensitive information will be handled as they choose?

Please share your thoughts about HIE and EMRs and where we are going with this process.

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