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.
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