How much control do you want over your health data?

Ever since I began participating in meetings and discussions about electronic medical records about ten years ago, there have been multiple consistent messages.

  1. The costs of U.S. healthcare are unsustainable.
  2. For what we pay, we do not get proportionately better care.
  3. To control costs and properly spread risk, everyone must be part of the system.
  4. Electronic medical records are essential to this process because they are the only way for all treating providers to have all the relevant information about patients.
  5. The ability of EMRs to communicate with one another, either directly or through a ‘clearinghouse’, is the only way to make this benefit available.
  6. Electronic medical records are essential because they will collect huge amounts of data that will allow empirical observation of which treatments are effective for which patients, thus allowing the development of evidence-based treatment and cost-effective care for most people.
  7. and finally . . . The patient must control their health information.

That last item is one that has been central in behavioral health treatment settings. We have always worked under the assumption that behavioral health and substance abuse treatment must be absolutely confidential, with only the patient (or their designated guardian) able to allow providers access to that information. At the Community Mental Health Center at which I interned, it was drilled into us that we were not even allowed to acknowledge that a person was a client of the center. Even that information would reveal too much about the client. Mental illness and chemical dependency still carry considerable stigma. The same, of course, is true for others who have illnesses considered super-sensitive. The person being treated for AIDS is subject to a great deal of potential discrimination for their diagnosis, just as is the behavioral health or chemical dependency client. And what about a person infected with EBOLA?

A recent Executive Briefing from OpenMinds discusses this notion in their article “Do You Want ‘Granular’ Control Over Your Health Record?” Just how much control over your health record is enough for your personal and professional comfort?  It could certainly be problematic for an ER physician not to know that you are taking an antidepressant, or pain medication, or a cocktail of medications to treat some serious illness. If you are unconscious, that ER doctor can at least learn your prescriptions. But what happens when you don’t tell a urologist or other non-emergency specialist all of your medications?

What is your personal inclination regarding this kind of privacy? And what about for your patients? How far does privacy need to go?

Please share your comments below.

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