Gimme My Damn Psychological Data

One of the hats I wear is as a founding board member and treasurer of the Society for Participatory Medicine, a nonprofit organization devoted to forwarding the agenda and rights of e-patients. E-patients are engaged, equipped and enabled to be an active partner in their own health care — including mental health care.

One of the memes the Society has been helping to forward recently is the “Gimme my damn data” movement — patients who want access to their (sometimes raw) medical data. For instance, Hugo Campos wants access to his defibrillator data. A simpler, more common example of this is ensuring you get a copy of the lab results for any blood work done on you.

Along those lines, I’d like to suggest another area where patients are entitled to their own data — psychological testing. All too often, patients who undergo psychological testing are not offered a copy of their raw and/or scored data voluntarily. In fact, psychologists often put up barriers to stop patients from receiving such data.

Psychological testing may include an IQ test, personality testing (such as the MMPI-2 or similar measure), and specific disorder or symptom tests (like the Hamilton or Beck inventories for depression). Psychological testing also includes neuro-psychological testing, which is more in-depth and can involve dozens of assessment measures.

The American Psychological Association’s Code of Ethics for psychologists states:

9.04 Release of Test Data
(a) The term test data refers to raw and scaled scores, client/patient responses to test questions or stimuli, and psychologists’ notes and recordings concerning client/patient statements and behavior during an examination. Those portions of test materials that include client/patient responses are included in the definition of test data. Pursuant to a client/patient release, psychologists provide test data to the client/patient or other persons identified in the release. Psychologists may refrain from releasing test data to protect a client/patient or others from substantial harm or misuse or misrepresentation of the data or the test, recognizing that in many instances release of confidential information under these circumstances is regulated by law. […]

(b) In the absence of a client/patient release, psychologists provide test data only as required by law or court order.

Notice how the APA gives psychologists the equivalent of a blank check to deny you access to your own data:

Psychologists may refrain from releasing test data to protect a client/patient or others from substantial harm or misuse or misrepresentation of the data or the test…

If a psychologist believes you might use the data in any way that constitutes a “misuse” (not defined within the Code of Ethics) or a “misrepresentation” (also not defined) of the data or the test, they can deny you access to your data. For instance, if a patient wants their test scores and says something like, “This will help me critique this test on my blog,” a psychologist could deny them access to their own data.

Because these terms aren’t defined, that gives a professional wide latitude when it comes to releasing the patient’s personal raw data or scores. Luckily, many state laws override this APA standard, allowing patients access to their psychological data no matter what.

What’s your experience been when you’ve asked for a copy of your psychological test data? Did the psychologist give it to you with a simple signed release? Please share in the comments section.

For more information…

Read more on this issue: Give patients (that’s you) access to all their (your) data — so they can help

Learn more about the Society for Participatory Medicine.