You must be paranoid!
Or then again... Imagine being diagnosed with schizophrenia in 2012. Imagine being recently discharged from a mental hospital and, in the privacy of your own home, swallowing an antipsychotic medication as part of your ongoing treatment. Imagine that the powdered medicine was wrapped in a capsule that included a tiny microchip and a microscopic antenna. When the capsule you swallowed mixed with the gastric juices in your digestive system, the microchip and antenna would be activated and transmit information to your doctor's computer or phone about the type of pill you took and the time it entered your stomach. Imagine that the microchip and antenna continued to transmit information to your doctor about your sleep, PH balance and body temperature.
My friends, this is not a delusion or a paranoid conspiracy theory. The technology I am describing exists and is under consideration for use in proposed research studies on health IT treatment interventions for those of us diagnosed with schizophrenia.
Please be clear. Medication has been helpful in my recovery and I believe there is a place for the judicious use of meds in mental health. The capsules or pills that are currently available from our pharmacies DO NOT have microchips and antennae, and they are not feeding back information to our doctors. However, we are in a brave new world and the future is upon us. Information technologies are emerging all around us and these technologies have an unprecedented capacity to track our personal biometrics and feed our personal metrics back to health authorities.
What should informed consent be like in the event that we are offered a "Police Pill" or, phrased more benignly, an "Assisted Treatment Pill"? Who should control access to the personal information that is generated by such pills? What action should be taken based on the information that is collected by such pills? Should your employer be warned that you have not slept in 2 days? Should a psychiatrist or case manager come to our home if we have not swallowed prescribed medicine in a timely fashion? Should family members receive a notice if the microchip says that we have not been sleeping enough? Should our doctor or nurse adjust dosages of medication based on biometric information received from these "smart pills"?
One of the reasons I created CommonGround was to begin to carve out a vision for the just use of technology to support recovery and informed medical decision making. I am proud of the work my team has done to create a web application that supports informed choice, recovery and shared decision making. I am proud to say that over 10,000 people in public sector mental health systems in the U.S. are using CommonGround. Personal Medicine, Power Statements, Decision Support and Shared Decision Making: These are the cornerstones of the CommonGround Software. CommonGround paints a vision about how health information technologies can be emancipatory and used to enhance self-determination for those of us who are devalued by our society. There is no doubt that health IT can be used for good. But so much more work needs to be done.
I urge consumer/survivors and our allies to join with me in the development of health and wellness technologies that reflect the values of recovery, choice and person centered care. If we don't do it, I am convinced that nobody will. I urge medical ethicists to partner with consumer/survivors to develop models for the just use of information technologies. I urge consumer/survivors to spread this post to friends and allies. I invite each one of you to respond with your ideas of what our communities should do to address the promise and the peril of modern health information technologies. Thanks and I look forward to hearing from you.