SELF IDENIFICATION TRUST
WHOLE COMPLEXITY VORTEX
THE HEALTH CARE SYSTEM
3 theories used as a metaphor to show the relationship between the healthcare system to the self.
If the whole really is greater than the sum of its parts, it doesn't really matter if those parts get replaced.
The Whole is always smaller than the sum of its parts
If that means reducing things “upwards” into wholes that are greater than them, we are in all kinds of trouble: logical, ecological, geopolitical. Inflationary holism is a form of mechanism, in which the parts are imagined as replaceable components.
I can think or compute them, and yet I can't directly see them.
(Tim Morton, 2019)
The interrelationships among adaptive elements of the system produce patterns of behavior, but not in a totally predictable fashion. Novel behaviors can emerge that could not be anticipated by knowing the agents individually. Consequently,
the whole system is qualitatively different than the sum of its component parts
. In addition, these patterns have implications for change in systems: because multiple connections within and between systems exist, the behavior of a specific practice is influenced by both internal and external factors. Within these systems there is also tension between the status quo and the need to adapt to changing conditions. Theoretical work suggests that systems ‘‘at the edge of chaos,’’ i.e., between equilibrium and complete disorder, may in fact be the most adaptive and creative.
(Using Complexity Theory to Build Interventions that Improve Health Care Delivery in Primary Care)
The uniqueness and individuality of any person is further explained by the interactions between the various components that make up the
person … the synthesis of problem lists reduces what may be meaningful clusters of problems… Systems theory recognizes the existence of an organized whole with overlapping, interacting systems.
…, the theories of ‘chaos’ and complexity suggest that much of the world is not linear and small changes can produce dramatic transformation of an entire system. … For example, individuals are more than the sum of the multitude of complex biochemical reactions taking place in their bodies, and social phenomenon cannot be fully explained in terms of the individual actions of people.
(Griffith & Byrne, 1998)
Metaphorically the complexities of the ‘health care system’ can be compared to a vortex. All the elements making up the ‘health care system’ exert their pressure onto the ‘health’ of the individual’s cells through their effects on the person’s environment and their effects on the balance of his somato-psycho-socio-semiotic needs. Minor changes to a single element within the system can have major, and often unforeseen, consequences on the whole system.
(Sturmberg & Martin, 2006)
The self is positioned in the healthcare system as a set of relations that cannot be narrowed down to the data it produce.
Patient > private domain > self
From the moment a patient enters the health care system, its identity is being analysed, processed and documented by humans and machines.
These separations, bits of informations of an individual are being scattered between the personal, discrete experience of its fellow humans or transformed to EHR for future use.
How am I being scattered?
Can I be traced back?
Am I a part of a new whole?
When is it not me anymore?
This combination of data is unique
This combination of data makes the person unique
This person makes this combination of data unique
Level of identifiability of information:
There is no definition to anonymous
Anonymous does not exist in intensive care medicine
what does it really mean in practice, is it ever possible to re-identify someone?
“Anonymization” of data refers to a subcategory of de-identification whereby data can never be re-identified. This differs from de-identified data, which is data that may be linked to individuals using a code, algorithm, or pseudonym.
Key Definition: “Pseudonymization” of data refers to a procedure by which personal identifiers in a set of information are replaced with artificial identifiers, or pseudonyms.
Key Definition: “Aggregation” of data refers to the process by which information is compiled and expressed in summary form.
Five techniques that can be used to de-identify records of information:
: The personal identifiers can be suppressed, removed, or replaced with completely random values.
: The personal identifiers of a selected field of data can be replaced with the average value for the entire group of data.
: The personal identifiers can be reported as being within a given range or as a member of a set (names can be replaced with “person name”).
: The personal identifiers can be exchanged with other information within a defined level of variation (date of birth may be randomly adjusted -5 or +5 years).
: The personal identifiers can be replaced between records (swapping the zip codes of two unrelated records).
Where it’s being separated from personal tagging and become a data point?
Where the personal indenificathion stays with the data and coming back to the patient?
De identified to the extant that the data cannot be reasonably re-identified.
This is not a guarantee, this situation can change at any moment as it depends on the technology available to mankind
What are the rights of each data unit?
Privacy statement by the Ministry of Health, Welfare and Sport]
Looking at data sets: how they see an individual? How would I look like as a data? How would it see me?
Training machine learning models in medical research can be include analyzing narrations (txt based reports), numerical values (monitors), imagery (scanning, X-ray).
Medical data = stories, features lists of diagnoses and template-generated descriptions of symptoms and physical examination findings. However, it provides little sense of how one event led to the next, how one symptom relates to another, the emotional context in which the symptoms or events occurred, or the thought process of the physician trying to pull together individual strands of data into a coherent narrative.
what do you see?
How can we trust this set of values to determine what would be the solution for an individual?
Positioning the self
The idea of creating (self) custom-made medication is as complex as understanding the rules of the SELF, the individual in the complex system that called the “health care system”
Seeing the individual as a set of numerical values is impossible, as the rule of the HCS is to accept the holistic approach to care - the individual is a set of its own body, environmental, community and circumstances.