• Set ALLOWTOPICVIEW = TWikiAdminGroup?
• Set DENYTOPICVIEW = TWikiGuest?

1. Big Brother and Big Other

2. The EHR and the Colonization of Human Bodies

3. Living in the Matrix

1 Big Brother and Big Other

2 The EHR and the Colonization of Human Bodies

3 Living in the Matrix

This reads like the roadmap paragraphs of a law review note, though with first-person pronouns. But no one reads law review articles, so they don't need to give readers a reason to read. You need to say clearly, in a sentence, what the point of your essay is, so readers can decide they want to go on.

The pivotal sentence in this current paragraph is "The healthcare industry has no need to surveil individuals or to manipulate them into buying things." This is self-evidently false. The things are patented molecules, sold at nearly infinite markup over cost, secured by state-granted twenty-year monopolies that can be indefinitely extended in travesty of law. The need for surveillance is overwhelming, because direct-to-consumer marketing is existentially necessary to the molecule merchants who, as the late Uwe Reinhardt once told NPR "have the largest equity stake in the US Congress."

You simply won't convince readers of your analysis if it depends, as this draft does, on the denial of that fact.

What is the point of this paragraph? It uses crucial space to digress from your subject, but does not seem to contain an idea important to the effort.

This is not a coherent topic sentence for what follows.

This is a very good start. The problems are, fortunately, not in the details, only in the fundamentals.

The best route to improvement is to restructure, so that a clear central idea is stated at the beginning of the next draft, continuously developed through the text, leading to a conclusion that expands upon the original idea, now fully expressed, and gives the reader somewhere further to take the thought process on her own. The current animating central idea is that privacy legislation creates surveillance markets. This is demonstrated on the basis of a single example, which would be insufficient no matter which example was selected. The existing example is flawed, because HIPAA did not create the desire for portable medical records. It is even more flawed, as I have pointed out, because of the "doesn't need to surveil or sell things" fantasy about the context.

The problem of the EHR is the problem of regulatory capture. The presence of competing incompatible methods of encapsulating health records suited the oligopolizing structure of US health care delivery. If you had followed instead the evolution of the VA's VISTA system and the Bluebell free software EHR you could see clearly what the present analysis misses.

Living in the Matrix

-- By LouisEnriquezSarano - 09 Oct 2020

_To solve a problem, one has to first know what the problem is. I argue that our collective failure to correctly identify the harms caused and threats posed by surveillance capitalism itself contributes to entrenching that very system. First, I briefly review a few of the more popular descriptions of this threat: (1) the threat to privacy, and (2) the threat to competitive capitalism, and (3) the threat to individual and collective autonomy. Second, I highlight an example of surveillance capitalism which these models fail to capture: the healthcare data market. The healthcare industry has no need to surveil individuals or to manipulate them into buying things. Nonetheless, the proliferation of a market in EHR data drastically undermines individual autonomy and medical ethics. Most important is that the health data market is that it would not exist but for privacy regulations, the Health Insurance Portability and Accountability Act (HIPAA). Thus, I hope to illustrate how misapprehending the pervasive threat of for-profit data collection and analysis can in fact exacerbate other problems, turning attempts to regain control into a futile game of whack-a-mole.

1. Big Brother and Big Other

Big Brother conjures the titular persona’s watchful eye within our lives: The government watching us through security cameras or Google reading our emails (and everything else we do), to name just two examples. For years, it was thought that the digital revolution’s greatest threat was to our individual privacy, our right not to be seen. Others have grown more concerned with the FAANG companies’ threat to capitalism: for instance, Amazon or Apple using their platforms to crush small business. It’s only more recently that the popular conversation has come to consider the threats to our actual autonomy. Films like the Great Hack and the Social Dilemma examine how social media enables private interests to shape our politics and influence where we go, what we do, and, of course, what we buy. Shoshanna Zuboff gave two names to this phenomenon: Big Other and instrumentarian power. The value of the expanded metaphor is in demonstrating that Google, Facebook, et al. are not merely peeping Toms but part of “the sensate, computational, connected puppet that renders, monitors, computes, and modifies human behavior.” (The Age of Surveillance Capitalism 293). These revelations are alarming: put the right article in front of the right people at the right time and you can buy a democracy. As others have already noted, the weakness of the Big Brother/Other metaphor is that it only draws attention to a particular type of threat posed by surveillance capitalism—the term “surveillance” may itself cabin our perception of big tech’s activities.

2. The Electronic Health Record: Profiting from the Human Body

Surveillance capitalists, ironically, need not watch us or control our behavior to profit from human life without consent, indeed laws meant to protect our privacy actually birthed the market for health data. The modern electronic health record (EHR) owes its widespread use to the Health Information Technology for Economic and Clinical Health Act (HITECH). Prior to its 2009 passage, only some 10% of physicians used an EHR. Now, thanks to $36 billion in subsidies, around 90% have adopted the technology. EHRs were well suited to the burgeoning surveillance economy, which Zuboff described as relying on simultaneous economies of scale and scope (Zuboff, 95, 201). EHRs contain patients’ vital signs, medical histories, family histories, illness diagnoses, immunization records, radiological images, test results and more. The EHR vendors and large insurance firms have amassed billions of dollars by refining EHR data and either selling it directly to pharmaceutical firms, or selling research conducted using the data. (Adam Tanner, Our Bodies Our Data: How Companies Make Billions Selling Our Medical Records 3–4 (2017)). HIPAA, which was meant to protect against the perceived threat of emergent digital technologies, made this market possible. By restricting the flow of EHR data, except for “healthcare operations,” treatment, or payment, it directs EHR data towards the large firms. Meanwhile it blesses the sale of de-identified data. Together these provisions form a data pipeline (the exceptions) and a moat (the prohibition on other transfers of data) that secure the large healthcare firms’ positions atop the EHR data market. The industry’s mechanics are more complex, but the punchline is that via our EHRs large firms can profit off of our bodies without our consent or knowledge. They don’t need to surveil us or to nudge us into buying anything. Perhaps more distressing is that our conception of surveillance capitalism as “Big Brother” or even “Big Other” totally fails to capture the healthcare surveillance industry. It is precisely this failure which leads to the passage of laws like HIPAA; as long as society misapprehends surveillance capitalism’s threat, it will fail to free itself.

3. Living in the Matrix

Convincingly conveying the full range of surveillance capitalism’s pathologies lies at the heart of swaying public opinion and securing digital freedom for ourselves and future generations. The best I can offer is the seminal science fiction movie, The Matrix. In that film human bodies are cultivated to produce energy for the machine overlords. Meanwhile their minds are connected to a vast simulation meant to lull them into submission. The metaphor captures the exploitation of both human bodies and minds, the sentience of the networked threat, and the lie that is our apparently harmless online world. The metaphor is imperfect, not least of all because it is silly. But I hope that drawing attention to surveillance capitalism’s new frontiers, created in part by privacy laws, will help expand the national dialogue and push us towards more comprehensive solutions, whatever they may be.

• #Set ALLOWTOPICVIEW = TWikiAdminGroup, LouisEnriquezSarano
• #Set DENYTOPICVIEW = TWikiGuest

Note: TWiki has strict formatting rules for preference declarations. Make sure you preserve the three spaces, asterisk, and extra space at the beginning of these lines. If you wish to give access to any other users simply add them to the comma separated ALLOWTOPICVIEW list.