the apomediary patient [patient expert]
The individuum (i.e., patient) is the phenotype expert on her/his individualized form of proper disease she/he is suffering from. It is not her/his treating physician, it is not a regulatory person concerned with the safety and efficacy of the medication geared towards treating her/his condition, and for sure it is not the marketing person at the pharmaceutical company which is the manufacturer of the medication.
More than ever you are the expert on your individualized form of your disease and how you react to the medication you take to alleviate your disease. You have become apomediary, that is a peer who has become an expert.
Your phenotypic reactions towards a medication (e.g., shrinking of your particular tumor, or developing a serious skin reaction) depend on a number of factors. Some of these factors may be genetic, some may be molecular, and some may be confounding.
Generally speaking, genetic factors will most probably be the most decisive factors that determine just what type (form) of disease you exactly suffer from, and/or govern your individual response towards a medication you take.
Confounding factors may be your normal habits, your dieting habits, your social drinking habits, your body mass index, your co-medications, your co- morbidities, your gender, and your age, to name just a few.
Even though we talk about (highly) individualized and personalized medicine, and even though you as a patient might have the feeling that you are the only one with your individualized form of disease and/or the treatment you receive is very unique to you, you are not alone.
Nature has it that decisive genetic, molecular, and confounding factors that govern your disease behaviour and treatment responses occur with certain frequencies in populations, some with high (e.g., one in ten individuals), some with very low (e.g., one in a million individuals) frequencies. Chances are that somewhere out there, there is a fellow patient of yours with the same set as yours of genetic, molecular, and confounding factors. Chances are that this fellow patient will largely behave just like you towards the same disease of yours. In fact, all fellow patients carrying the same set of disease behaviour determining factors will behave largely alike. One could say that all these fellow patients share the same destiny based on their indentical genetic, molecular, and confounding factors, falling into a (sub)group of patients with very similar behavior towards the respective disease and/or medication. Fellow patient members of such groups may be located at any place globally seen, and speak any one of the many languages worldwide.
Absolutely flabbergasting new developments in the area of mobile and wearable diagnostic devices, which actually record values on vital functions and of (blood) chemistry in individual patients will shortly help to further the recognition of subgroups of fellow patients whose vital signs, phenotypic behaviors, and genetic backgrounds fall together.
thasso facilitates the crowdsourcing and sharing of the collective wisdom within such patient subgroups (communities) in a mobile fashion, around the clock, and completely independent of the geolocation of the fellow patient member. In the process, the level of partizipation and the control over it remains with the individual. You may decide to just follow the online activities of fellow patients, or you may decide to share parts or all of your electronic medical record (EMR) with your fellow patients. It’s up to you.