Open medicine, or becoming a Patient Expert

Open Medicine is not just about publishing or sharing information about experts, but also about empowering. Billiam James’ powerful and passionate intervention, peppered with evocative images, addressed the power relations inherent in medicine and advocated the necessity for the patient to become an expert, in order to be able to ask questions, to make informed decisions before accepting a treatment or a medication.

unfortunately, the patient is not always in the condition to actively shape her own treatment, as emotional conditions, desperation, hope that he/she will find the magic pill that will cure any disease, as well as temporary or long term incapacitation (due to mental illness, or disability, two conditions that put the patient at the mercy of the practitioner , the family and the system) may hinder or prevent any informed decision making.  James identifies a list of states that can prevent the patient from exercising his/her right to make responsible decisions on her own: when the patient is disabled, depressed, desperate, despondent, dismissed, demented, or dependent, he/she loses her ability to make decisions, not just because of a physical or psychological condition, but also because of assumptions and stigmatize the patient as un-capable of taking any independent decision.   This is the case of Teresa, a woman with down syndrome who was forced into a nursing home against her will.  her case was highlighted in a video petition that will eventually help her express her desire to live with her sister again.

teresa