Medical Privacy and Pandemic Privacy

In recent post I expanded on an earlier thought about there being two distinct medical systems while we pretend there is only one.

The one medical system revolves around a highly trained medical workforce requiring lengthy and exclusive education and internships plus a high capital investment in fixed medical facilities.   As recently as the government overhaul of medical care in a bill called Affordable Care Act, the legislation covered all aspects of medical care as if there is this unifying concept behind it.   Medical care is about doctors, nurses, specialists, medical facilities and their state-of-the-art equipment.

Until just recently, we understood the primary challenges to medical care concerned individual conditions or illnesses ranging from acute problems such as an isolated sickness or some trauma, to chronic conditions such as heart disease or cancer.

Due to the individual nature of the complaints, the doctors and nurses need to be trained broadly to be adequately prepared to respond quickly to the random new patient.   There is specialization, but that specialization also requires extensive training to exceed the general skills of other doctors or nurses.

All of these disciplines and their associated equipment are built on the assumption of a steady but manageable stream of new patients with widely varying conditions.

I recall the debates surrounding the passage of the Affordable Care Act.   While there was some inadequate description of how this would apply to pandemics, the primary focus and selling points of the passage involved anecdotes involving examples of people needing organ transplants, access to expensive procedures and specialists or else their lives would end or become miserable.   All of these examples were isolated and distinct.   The law itself reflected this, being applicable to each individual’s unique circumstances.

This individualized model of health care, where each individual has specific and unique medical needs that the system should deliver, is coincidental with the notion of medical privacy.   Long before the Affordable Care Act, there were laws about protecting individual medical records and restricting how this information may be distributed.   This notion of medical privacy is based on the same notion of individualistic medical needs.   Each person has his own specific circumstances that sets him apart from everyone else.   As a result, the medical conditions becomes part of a person’s private identity.

Individual and unique medical needs is a basic assumption behind both types of laws: one concerning access to medical care, and the other concerning restrictions of distributing a patient’s medical information.   The result is the establishment and protection of an exclusive medical system of practitioners and facilities designed for widely diverse set of patient needs yet a steady influx of new patients balanced by a steady outflow of recoveries or deaths.

I don’t recall much discussion about how these laws affect our ability to respond to communicable disease epidemics.   I do recall the topic coming up, but it was dismissed quickly as a special case of business as usual.   The same doctors, nurses, and facilities can handle the disease just like they can handle anything else.   Mostly, though, I think the eventuality was considered to be remote and not worth worrying about.   We had high confidence in the disease control bureaucracy to rapidly contain any outbreak before it would reach epidemic levels.

Though unstated at the time, there was a sense that another epidemic would be and end-of-the-world type scenario.   It is as if there is no point in investing into a distinct plan for epidemics because if they would occur, the world would be having much larger problems making the response more or less irrelevant.

Also, a specific policy for epidemic planning would detract from the more immediate priorities of delivering individualized health care to all who needed it.   The solution was a single system, one funded to handle the normal flow of individualized cases but with the expectation that the same infrastructure will absorb the needs of an epidemic by reallocation of resources and prioritizing cases.

The bottom line is that the same valuable personnel, procedures, and hospital beds would be reallocated to the epidemic needs.

It does not make sense to reassign highly trained personnel who can handle random individual cases to handle very routine and recurring cases resulting in epidemics.   It also does not make sense to expose these highly trained personnel to the risk of getting the disease themselves or the risk of contaminating the hospital for everyone else, making impossible the original goal of providing care to individualized conditions.

I wrote earlier, that epidemics, such as this one, presents a very different medical challenge.   The disease has a very specific sequence of outcomes.   While there may be some variations, there is usually a single outcome that is most responsible for needing intensive care and for fatalities.   In this particular case, that outcome is pneumonia.   There is a specialization for managing the various stages of pneumonia, but the actual practices are not very difficult to learn.   There really is no cure for the actual condition.  Instead, the processes are for managing the processes to sustain the patient’s life long enough for the body to recover on its own.

The practitioners needed for managing the severe cases of this disease might be trained from the general population within a short time.   Even with just a couple weeks of training, people in the general population can help out with many tasks.   Perhaps in as little as a couple months, they can be fully qualified to handle most of the tasks involved with managing the most common complications of the disease.    The few extraordinary cases remaining could be referred to the preexisting doctors, nurses, and facilities.

Most of the caseload could be handled by the newly trained and temporarily assigned workers.

It is at least conceivable that government planners could have separated the individualized medical needs for very unique circumstances from the repetitive and widespread needs for a large population going through the same responses to a single epidemic.   The first requires highly trained and career-length professionals along with large capital investments.   The second can be handled with temporary and quickly trained people with relatively low investments.

Unlike the individual cases each requiring its own practices and equipment, the epidemic presents identical needs allowing for mass production of needed materials: basic protective equipment, beds and linens,  disinfectant, comforting medications, respirators, etc.

Similarly, the epidemic condition changes the role of patient privacy.

In regular medicine, privacy is necessary because each patient has a unique set of conditions such as one being a stroke, another being a heart attack, another being an organ failure, etc.  This information needs to be protected because similar patients are so rare.

In epidemics, large numbers of people will follow very similar sequence of conditions and outcomes.   The mere fact that someone has the disease is enough to know that they will have certain conditions, and if situations worse, it is well known what the next stage will be like.    In addition, there is a public interest in knowing who is infected, who has been infected in the past, and their current conditions.    Currently, there is great length to apply the normal medical rules for protecting patient privacy.

Given the established one-size fits all medical policies, we have no choice but to allow the general population only to know general counts of cases and outcomes with no additional information such as precise locations and the specific age or other characteristics of that location’s patient.   I ask whether there has ever been a time when anyone in government has seriously defended this approach with a serious consideration that an epidemic could actually happen before the collapse of society.

Currently in my State, the two counties with the highest number of cases are adjacent counties, one much larger in land area than the other.   We see these results, but we have no information about what part of the county, whether the cases are concentrated in one area or diffuse throughout, whether the county-specific cases are hospitalized or experienced fatalities.   The absolute numbers are so low that giving this information would identify the individual.   While the epidemic is affecting everyone (businesses are closes, we’re being admonished to keep 6-feet separation from each other),  the actual cases are private matters known only to the patient and his medical providers.

The question I raise is has the government previously thought this through when times were more relaxed, and have they concluded that epidemic patients are no different from individualized cases normally handled in medical systems.   Has the government’s medical bureaucracy even specifically evaluated the epidemic scenario with any seriousness that such a scenario would actually occur in our lifetimes?  If so, were their recommendations any different than the policies currently enacted, and if different why were there recommendations rejected?

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