As if there weren’t enough to worry about in the arena of personal privacy, now comes one more red flag. This just-published article on the Politico website reveals that companies are secretly gathering your health care information and selling it to doctors, hospitals and insurance companies, all without your consent and – for now, at least – with little regulation or oversight.

Data Gathering Being Done Secretly

The practice, says Politico, has been going on for many months, all in an alleged effort to single out patients who might be at higher than average risk of becoming addicted to opioids. “Over the past year,” says the article, “powerful companies such as LexisNexis have begun hoovering up the data from insurance claims, digital health records, housing records, and even information about a patient’s friends, family and roommates, without telling the patient they are accessing the information, and creating risk scores for health care providers and insurers.” The motive – keeping addictive drugs out of the wrong hands – may be noble, but the accuracy of the practice is highly suspect.  “While the data collection is aimed at helping doctors make more informed decisions on prescribing opioids, it could also lead to blacklisting of some patients and keep them from getting the drugs they need, according to patient advocates.”

This revelation comes at a time of heightened scrutiny of the problem of opioid abuse, including among seniors. In the words of this 2017 article from the AARP Bulletin, “Americans over 50 are using narcotic pain pills in surprisingly high numbers, and many are becoming addicted.” Tragically, in reporting on the growing opioid crisis, the older end of the age spectrum has often been neglected.  “While media attention has focused on younger people buying illegal opioids on the black market,” says AARP, “dependence can also start with a legitimate prescription from a doctor: A well-meant treatment for knee surgery or chronic back troubles is often the path to a deadly outcome.” According to the Bulletin article:

• Almost one-third of all Medicare patients — nearly 12 million people — were prescribed opioid painkillers by their physicians in 2015.
• That same year, 2.7 million Americans over age 50 abused painkillers, meaning they took them for reasons or in amounts beyond what their doctors prescribed.
• The hospitalization rate due to opioid abuse has quintupled for those 65 and older in the past two decades.

Data Gathering Produces Inaccurate Results

So if it’s true that seniors are at risk of over-prescription of opioids, then we should support the kind of under-the-radar data-gathering described in the Politico article, right? Not necessarily, researchers say. The biggest problem, besides the secrecy that shrouds the data-gathering practice, is that the algorithms used to evaluate the risk of a particular patient becoming addicted to opioids – or any other prescription – are not necessarily accurate. “Overestimating risk might lead health systems to focus their energy on the wrong patients,” warns Politico, while “a low risk score might cause a patient to fall through the cracks.” In an effort to reverse the tide of opioid addiction, new rules now require doctors to look up individual patients in a drug database to evaluate “whether a patient in pain can take opioids safely, in what doses, and for how long — and which patients are at high risk of addiction or overdose.” The so-called risk scores created by Big Data companies are being aggressively marketed as a kind of short-cut.

According to Politico, “The practice scares some health care safety advocates. While the scoring is aimed at helping doctors figure out whether to prescribe opioids to their patients, it might pigeonhole people without their knowledge and give doctors an excuse to keep them from getting the drugs they need.” Indeed, as we read in this article from the Kaiser Health News website, worries about addiction may already be making it more difficult to fill legitimate prescriptions for pain-killers. “As concern grows about a national opioid epidemic,” says the article, “some seniors now find it harder to get medications they need from doctors and pharmacies. Some medical practices refuse to accept patients already taking an opioid for pain.” This heightened level of restriction, while well-intended, seems to fly in the face of the doctor-patient relationship.

Data Gathering Keeps Drugs from Those Who Need Them

One geriatrician quoted in the Kaiser article explained it well. Her goal, she said, is to help patients control chronic pain sufficiently enough that they can function well, “because ultimately in older adults, their function and ability to live independently is one of the greatest predictors of health. I have patients who unless they take their opioid really cannot get out of bed. And if that small dose of opioid is going to help them get out of bed and move around their house and cook for themselves, then that is absolutely something worth doing.” This physician put the risk of addiction in perspective. “Their biggest risk is going to be if they stop moving and [decline more]. That’s going to have a bigger consequence on their health than prescribing an opioid at a reasonable dose and with close supervision.”

This issue clearly represents merely the tip of the very large iceberg of data-gathering and privacy. Are we at the mercy of big companies acting in secrecy, using what Politico terms “inaccurate public data” in order to “disempower patients” with “Big Brotherish” ratings systems? It sure sounds that way. Our recommendation for all seniors is that you choose your primary health care provider wisely, and whenever possible that you employ the services of a board-certified geriatrician. He or she understand the unique health care needs of older adults and will give you the best possible guidance in all aspects of healthy living, including pain control. We’ll also keep an eye open for future articles concerning this process of secret data-gathering. As Politico reports, “Congress hasn’t taken up the issue of intrusive big data collection in health care. It’s an area where technology is moving too fast for government and society to keep up.”

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If you’re getting serious about planning for your retirement future, we hope you’ll accept the invitation from Rajiv Nagaich of AgingOptions to join him soon at a free event called a LifePlanning Seminar. You’ll discover an exciting model for comprehensive retirement planning in which health care, financial security, legal protection, housing choices and family communication are all woven together into one powerful and seamless retirement blueprint. It’s the key to building the retirement of your dreams.  You’ll find a calendar of upcoming seminars on our Live Events page – then simply register for the date and time that works for you.

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(originally reported at www.khn.org)

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