Kiss What Is Left of Your Medical Data Privacy Goodbye

Matt Stoller warned back in 2012 that insurers would increasingly induce, then force, customers to agree to surveillance. But a Wall Street Journal story describes how insurers and medical providers, meaning your doctor’s employers, are actively cooperating, so as among other things, to help Big Pharma peddle more drugs to you.

Stoller warned that over time, insurance companies would make it prohibitive and eventually impossible to refuse to agree to intensive monitoring:

Profit-driven surveillance does not start and stop with young adults. It is, in fact, becoming pervasive. The main theme of a recent IBM consulting document on the future of the insurance industry is how much more money an insurance company can make if it tracks and tags its customers. This is particularly true for auto insurance companies, some of whom like Allstate and Progressive are experimenting on new technologies. For instance, IBM suggests that “A “pay-as-you-live” product would trade some location and time-of-day privacy data for lower insurance bills overall.”

IBM is recommending these companies stick a sensor in your car, measure where you go and when, your speed, acceleration and deceleration, etc. The progression over time could be to withdraw traditional insurance products, so that you won’t be able to get an insurance product without sensors attached. As this presentation offers, “The aforementioned rising tide of technology also empowers insurance underwriters to bring their products closer to realtime interaction via sensor networks and enlightened privacy regulations.”…

Now at least this progression has the appearance of being consensual. First you are paid for giving up your privacy, then over time, the positioning changes so that customers have to pay a premium for non-monitored products, and then as their usage falls (and you get a lot of adverse selection), the insurer can pretend to be justified in getting rid of the privacy products, having set them up to fail.

And even though far too many people are perfectly happy to wear devices that monitor some health measures on an ongoing basis, at least they chose for the data to be collected and hopefully have some appreciation that promises about privacy too often aren’t what they appear to be.

But the Wall Street Journal describes what amounts to a full bore war on individual medical privacy, including linking medical histories to credit records. And the author puts a big smiley face on this effort by depicting it as breaking down silos. “Silos” is a dog-whistle word in Corporate America. Silos are bad! Sharing is good! From the article:

Although technology exists to make AI a potent tool, there is a snag. Data relevant to answering specific questions often reside in various locations, from hospitals to diagnostic labs to pharmaceutical companies. These information silos are typical in the health-care field, leaving scientists and other medical professionals at a disadvantage to harness the full predictive power of AI.

Small businesses such as PatientMatters LLC and Prognos Health Inc. are overcoming the data-gathering obstacles to provide insights to medical customers including health plans. “For Prognos to do what we do, you need to have large data sets,” said Sundeep Bhan, co-founder and chief executive of Prognos, which helps insurers predict their members’ disease risks.

Lovely. So now we have medical pre-crime, since these data-diggers are making it sound as if they are doing more than projecting out the typical trajectory of pre-existing conditions. Again from the article:

Prognos…has teamed up with diagnostic labs to accumulate diagnostic data on 200 million patients, which it marries with information from health plans to answer questions such as which members are likely to develop a specific condition.

Diagnostic labs, which hope their data will be used to solve medical problems, share the entrepreneur’s dreams of seeing medicine take a leap forward, Mr. Bhan said. “At the end of the day, in health care, that’s what we care about,” he added.

If you believe that, I have a bridge I’d like to sell you, as the story itself demonstrates:

Prognos, which has about 100 employees, aids pharmaceutical companies’ marketing efforts by helping them identify health-care providers that have patients who could benefit from their drugs….

Companies such as PatientMatters have crafted services….aims to help health systems gauge patients’ ability to pay bills and identify financial-aid candidates.

PatientMatters, based in Orlando, Fla., and formed in 2012, analyzes medical information from clients as well as publicly available financial data from credit-reporting agencies and other sources…

Increased use of high-deductible insurance plans means health-care providers must collect more of their revenue from patients. By gathering data and applying AI and machine learning, PatientMatters, which has 235 employees, can help clients anticipate people’s payment behavior…

The article describes how the data hounds have had some success in getting hospitals to hand over emergency room data as well as medical images.

Some issues:

How much of this will wind up being a garbage-in, garbage out exercise? Most of this data is presumably from electronic health records. We’ve regularly published cross posts from Health Care Renewal on this topic, describing in depth what a train wreck they are. The short version is that EHRs were designed for billing purposes, not with medical care in mind. Two of many examples: Health Care Information Technology: A Danger to Physicians and to Your Health and How Electronic Health Records Degrade Care and Endanger Patients.

How much has Obamacare with its neoliberal shopping imperative, undermined this data gathering and mining? In theory, if you have opted to be in an HMO, all of your records ought to be under the same roof. But what if thanks to Obamacare, you switched HMOs, or went from an HMO to a PPO and then back, or even went without coverage? Your medical records are supposed to go from your old provider to the new ones, but how often does that happen well? I know of people who insist on getting copies of all of their blood and other major tests to carry with them to doctor visits, since they’ve found too often the doctor either doesn’t have all of the information or doesn’t have ready access to it.

How much will this effort be used to further corporatize care and reduce doctor input? It is a safe bet this sort of data will be used to advance the corporatiation of medicine, which we first discussed in a 2013 post, citing Dr. David Edelberg at Whole Health Chicago (emphasis original):

• The health industry hopes that individual medical practices and small medical groups will ultimately disappear from the landscape by being financially absorbed into larger groups owned by hospital systems.

Physicians are expected to spend a limited amount of time with each patient, and are encouraged to see as many patients as possible during a workday. The insurance companies, sometimes with the token cooperation of a few physician-employees, create vast books of patient-care guidelines to which they believe their physicians must be “accountable” (remember this word, it will crop up again). These guidelines might mean documented Pap smear and mammogram frequency, weight management and exercise, colonoscopies for patients over 50, and getting that evil LDL (bad cholesterol) below 99 by any means possible…

If the chart audit system discovers that a physician, for whatever reason, is an “outlier”–that she’s either not following the guidelines exactly or not getting the results anticipated for her patient population—she’ll be financially penalized. A quick example of what might occur: if your LDL is 115, you may be on the receiving end of a statin sales pitch from your doctor, not because bringing it down to 99 will improve your longevity, but because your refusal to do so will impact her financial bottom line….

…the subtext of “standardized” always includes the unspoken “spend less money on the patient.” Thus, a doctor might be financially penalized for recommending nutritional counseling to lower cholesterol (“counseling is expensive”) instead of writing a generic statin drug (cheap). Or recommending psychotherapy (“therapy is very expensive”) instead of generic Prozac (cheaper than M&M’s). Or referring patients for massage, acupuncture, or even chiropractic (“expensive, expensive, expensive!”) instead of pushing an over-the-counter antiinflammatory (free to the insurance company, as it’s OTC).

And the connection to credit data is cringe-making. Just wait for the articles saying that a better credit score means better health, when if there is any causality, it almost certainly runs the other way.

There’s an even more immediate possible use for this information, as Wall Street Journal reader Michael Heinzmann pointed out:

With the GOP hell-bent on eliminating protections for patients with preexisting conditions from guaranteed access to health insurance – any leakage of personal/private healthcare data would have devastating effects upon millions of patients. Healthcare organizations have a very poor track record on protecting their customers’ data (and none have suffered any significant sanctions).

Even thought I am pretty well insulated from this data hoovering by a combination of happenstance and habit, it makes me very uncomfortable to know it is going on, particularly since I won’t be able to continue to be a refusnik once I reach Medicare age unless I become an expat, which is likely to be too high a hill for me to climb.

And if you think these concerns are overwrought, please read a Financial Times article Lambert flagged yesterday, a review of Shoshana Zuboff’s The Age of Surveillance Capitalism. A key section:

Although Zuboff is a professor emerita at the Harvard Business School, her account is as much polemical as it is academic. She is determined to awaken our sense of astonishment and outrage about how this rogue capitalism has evolved to dominate and degrade our lives, largely unnoticed and unchallenged. She also makes one other more worrying and highly contentious claim: that surveillance capitalism has created a new kind of unaccountable power: instrumentarianism. She defines this as the instrumentalisation of behaviour for the purposes of modification, prediction, monetisation and control that threatens to challenge some of the functions of the state and usurp the sovereignty of the people. Instrumentarianism can determine the ends, because it can manipulate the means.

Zuboff warns the state won’t do much to stop this trend, because it is often a beneficiary and co-conspirator. So it falls to us to throw sand in the gears when we can.