The Pimp Factor In Health Disparities

Back in December of 2020, an old athletic injury flared up. Through my primary care physician, I scheduled a session with an orthopedist. The appointment went well. There wasn’t much to be recommended; I’m simply getting older with a banged-up knee. The orthopedist referred me to a physical therapist. After a few closely supervised workouts, the knee started to come around. Having mastered the beneficial exercises, I continued the regimen of workouts at home with increasingly good results.

Then I got the summary statement of my visit with the orthopedist. Everything was fine until I reached the line under “Allergies.” A drug, Amoxicillin, was listed, with no reactions described, but under a column titled “Comment” was the word “Hepatitis.” This was an error, but I wondered how it happened to appear on this particular summary when I had numerous other provider appointments over the previous year (see “My Story” post). In those treatment summaries, the Amoxicillin “allergy” appeared, but there was no reference to Hepatitis.

I am indeed sensitive to Amoxicillin, a discovery made when it was prescribed several years ago during a visit to an urgent care center. Whenever I discuss this Amoxicillin sensitivity with providers, I try to explain that if Amoxicillin were the only available treatment for an illness I contracted, I would take it and deal with the stomach upset it causes as a tolerable side effect. This is the kind of granular conversation I try to have with medical providers to give them the most accurate understanding of my physical idiosyncrasies and general state of health. Nevertheless Amoxicillin consistently appears as an allergen in my medical record. The sudden appearance of a hepatitis diagnosis was a shock.

I immediately contacted my primary care physician, a younger geriatrician whom I regard as competent, diligent, and most of all genuinely concerned with my overall well-being. I offered a reminder that we’d had discussions about my hepatitis vaccination status, and I verified that my previous geriatrician had screened me for the virus years earlier, found that I was negative, and arranged for me to be vaccinated.

A records hunt ensued. Apparently, the information was not in any readily accessible medical information. There was another level of medical data storage where evidence of my hepatitis screening and vaccination was apparently recorded. I was assured that as a result of my inquiry, an effort would be made to scrub any claim or insinuation of hepatitis exposure from my medical record. This is just one recent, personal example of how electronic medical records are prone to error, how those errors tend to persist and metastasize, suggesting that patients must constantly monitor those records as best they can to ensure that the information contained therein is complete and accurate.

So how is that going? Nearly 50% of Black seniors and 53% of Hispanic older adults lack online “patient portal” accounts with their health care providers as of June 2020, compared with 39% of white elders.

MINING MEDICAL DATA TO REDUCE 'DISPARITIES'

Given this recent experience, it was with special curiosity that I read of the formation of a massive collaboration by large health care systems to mine databases containing patients’ personal medical data. The rationale given was that the rapid development of Covid-19 vaccines has demonstrated the value of data-driven research in the creation of new medicines and therapies — the assumption being that allowing a cartel-like organization free access to mine patient data will extend the benefits of this highly exceptional process that was compelled by a dire global emergency. To wrap all this up and tie it off with a bow, there was the additional claim that more ‘personalized’ therapies enabled by the appropriation of patient data would lead to a reduction in the grievous health disparities revealed by Covid-19 infection and mortality statistics.

In Black lexicon, it is commonplace to convert nouns to verbs, a way of placing emphasis on or elaborating the meaning of a well-understood symbol. For example, the pimp is a figure of some renown in Black lore. Suave, stylish, outwardly admirable, he is also a parasite, an amoral and ruthless exploiter. The role and character of the pimp is activated by converting noun to verb — “pimping” — which is just to say that the thing so labeled is acting like a pimp.

A classic case is the so-called War on Poverty declared by President Lyndon Johnson in the mid-1960s. A myriad of social programs were enacted to eradicate poverty in this, the world’s richest country, with billions poured into the effort. But after all those billions flowed through the various layers of bureaucracy and salaried operatives charged with poverty’s eradication, poverty to this day is undiminished and unrelenting. Black poor and working people, victims of this charade, came to refer to those who espoused the slogans and ideologies associated with ‘fighting poverty’ as ‘poverty pimps.’

The Black and Brown health disparities so widely publicized in relentless media coverage of Covid-19 misery have the potential to become the same kind of feeding trough that poverty became in the decades following the 1960s. This is not to say that there isn’t value in accessing carefully protected personal data from patient medical files, there is. But the HIPPA regulations cited as this effort’s privacy bulwark are an imperfect protection at best.

And there is something else. We already know that the main influences on health are socially determined — adequate food, shelter, environmental soundness, and access to quality medical care, for example. Little is being done to address these readily correctable deficiencies as they exist in Black and Brown communities, but this data mining effort asserts that the returns on massive data appropriation can far exceed the value of social reforms and interventions. That may be true, but have excessive value for whom?

WASH, RINSE, REPEAT

One salient feature of this proposal to mine patient data as a tool for ‘mitigating’ health disparities is the emphasis on depersonalizing the data — stripping it of characteristics that could be traced to its individual producers. This prompts another ghettoization of exposition, invoking the so-called laundering of drug money.

The purpose of a money laundry is to conceal the source of ill-gotten gains, and not for good reasons. The laundry exists to convert illegal profits into legally acceptable forms — shifting it from the profane world to the sacred. The obverse transformation occurs with the ‘donation’ of human organs. They have to be ‘washed’ through a non-profit mechanism, scrubbed of their ‘sacred’ nature before being introduced to the ‘profane’ world of medical commerce. Like natural diamonds, there is no shortage of human organs, only the restraint of a severely regulated system — in this case justified by ‘ethical’ concerns.

Stripping patient data of its personal identifiers functions like a laundry, transforming unique human products into a fungible commodity. Like oil or soybeans or any other raw commodity, once it enters commerce all bets are off. That’s the real benefit of this process: commerce, making that which is private and protected public and exploitable — shifting the sacred to the profane. Who knows whether the data being pulled from these sources is complete or accurate? The data in my medical record has not always been. And as a colleague knowledgeable about these matters remarked, everyone involved in this process gets paid — medical researchers, engineers, IT specialists, data brokers — everyone but the patients whose data is appropriated. What’s not to like about free raw materials if you are into manufacturing biologic products for profit?

Given the obvious commercial motive and discounting the efficacy of socially based health determinants, the claim about reducing disparities rings hollow, spurious. And who knows what technology may come along to make restoration of identity possible — the intention of the research to target zip code geographic precision certainly leaves that door open. I could be wrong, but it seems to me that it’s now open season for pimping health disparities. The promise of health equity, like vows to eradicate poverty, destined to be a mirage. Or as word on the curb says it, “They just pimpin’ to be pimpin’."