A lot of people are feeling that major institutions of our time have been compromised, hijacked, or perverted in some way: journalism, social media, even politics. Readers of Adam Tanner’s new book, Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Records, might well add health care data to that list.
Companies collecting our data–when they are not ruthlessly trying to keep their practices secret–hammer us with claims that this data will improve care and lower costs. Anecdotal evidence suggests it does. But the way this data is used now, it serves the business agendas of drug companies and health care providers who want to sell us treatments we don’t need. When you add up the waste of unnecessary tests and treatments along with the money spent on marketing, as well as the data collection that facilitates that marketing, I’d bet it dwarfs any savings we currently get from data collection.
How we got to our current data collection practices
Tanner provides a bit of history of data brokering in health care, along with some intriguing personalities who pushed the industry forward. At first, there was no economic incentive to collect data–even though visionary clinicians realized it could help find new diagnoses and treatments. Tanner says that the beginnings of data collection came with the miracle drugs developed after World War II. Now that pharmaceutical companies had a compelling story to tell, ground-breaking companies such as IMS Health (still a major player in the industry) started to help them target physicians who had both the means of using their drugs–that is, patients with the target disease–and an openness to persuasion.
Lots of data collection initiatives started with good intentions, some of which paid off. Tanner mentions, as one example, a computer program in the early 1970s that collected pharmacy data in the pursuit of two laudable goals (Chapter 2, page 13): preventing patients from getting multiple prescriptions for the same drug, and preventing adverse interactions between drugs. But the collection of pharmacy data soon found its way to the current dominant use: a way to help drug companies market high-profit medicines to physicians.
The dual role of data collection–improving care but taking advantage of patients, doctors, and payers–persists over the decades. For instance, Tanner mentions a project by IMS Health (which he treats pretty harshly in Chapter 5) collecting personal data from AIDS patients in 1997 (Chapter 7, page 70). Tanner doesn’t follow through to say what IMS did with the AIDS data, but I am guessing that AIDS patients don’t offer juicy marketing opportunities, and that this initiative was aimed at improving the use and effectiveness of treatments for this very needy population. And Chapter 7 ends with a list of true contributions to patient health and safety created by collecting patient data.
Chapter 6 covers the important legal battles fought by several New England states (including the scrappy little outpost known for its worship of independent thinking, New Hampshire) to prevent pharmacies from selling data on what doctors are prescribing. These attempts were quashed by the well-known 2011 Supreme Court ruling on Vermont’s law. All questions of privacy and fairness were submerged by considering the sale of data to be a matter of free speech. As we have seen during several decisions related to campaign financing, the current Supreme Court has a particularly expansive notion of what the First Amendment covers. I just wonder what they will say when someone who breaks into the records of an insurer or hospital and steals several million patient records pleads free speech to override the Computer Fraud and Abuse Act.
Tanner has become intrigued, and even enamored, by the organization Patient Privacy Rights and its founder, Deborah Peel. I am closely associated with this organization and with Peel as well, working on some of their privacy summits and bringing other people into their circle. Because Tanner airs some criticisms of Peel, I’d like to proffer my own observation that she has made exaggerated and unfair criticisms of health IT in the past, but has moderated her views a great deal. Working with experts in health IT sympathetic to patient privacy, she has established Patient Privacy Rights during the 2010 decade as a responsible and respected factor in the health care field. So I counter Tanner’s repeated quotes regarding Peel as “crazy” (Chapter 8, page 83) by hailing her as a reputable and crucial force in modern health IT.
Coincidentally, Tanner refers (Chapter 8, page 79) to a debate that I moderated between IMS representative Kim Gray and Michelle De Mooy (available in a YouTube video). The discussion started off quite tame but turned up valuable insights during the question-and-answer period (starting at 38:33 in the video) about data sharing and the role of de-identification.
While the Supreme Court ruling stripped doctors of control over data about their practices–a bit of poetic irony, perhaps, if you consider their storage of patient data over the decades as an unjust taking–the question of patient rights was treated as irrelevant. The lawyer for the data miners said, “The patients have nothing to do with this” (Chapter 6, page 57) and apparently went unchallenged. How can patients’ interest in their own data be of no concern? For that question we need to look at data anonymization, also known as de-identification. This will begin the next section of our article.