Each year as seniors begin choosing between traditional fee-for-service Medicare and Medicare Advantage, they are bombarded by ads and mailings aggressively pitching health plan perks like dental and vision care or gym membership. Unadvertised, though, is how some plans use consumer data to quietly address more fundamental needs.
Join the right plan and you could get food when you’re hungry, companionship when you’re lonely and even — during the height of the pandemic — home delivery of toilet paper. The goal is to prevent issues like food insecurity, depression, and shopping while unvaccinated from developing into issues needing expensive medical care.
But there’s a hidden catch to this comforting scenario. One way that Medicare Advantage plans find those who might need help is by secretly analyzing members’ detailed information ranging from their credit scores and shopping habits to how often they vote.
How detailed? One leading vendor, Carrot Health, sells analytics that contain “up to 5,000 individually certified variables for every adult in America.” These are said to be based on “clinical, social, economic, behavioral and environmental data” from more than 80 sources.
The use of what’s obliquely termed consumer data is increasingly common not only by health plans but also by health systems and others who have an economic interest in controlling costs. Yet these activities have largely escaped the kind of scrutiny focused on companies like Facebook or Google.
There are two important reasons to end the secrecy surrounding health data analytics, both of which involve the crucial element of transparency.
The most obvious problem is an ethical one. Consumer data may be sensitive, but it isn’t covered by the privacy and disclosure rules protecting medical information of patients or plan members. So the data users keep quiet, avoiding the need to have to explain why they’re analyzing the intimate data of individuals’ lives without telling them.
It is a secrecy that recalls the way surgeons once kept patients in the dark about the possible risks of a procedure in order to forestall possible patient objections to the surgeon doing what they “knew” was best.
Let me be clear: Secret analysis of information about individuals’ private lives in a health care context, even with the best of intentions, violates patients’ and plan members’ trust. No matter the motivation, it’s unethical.
That does not, however, mean this type of data should never be used. Apart from disclosure, the data’s underlying validity and usefulness is a separate issue, and one with a separate type of transparency problem.
The potential impact on people of all income levels of addressing so-called social determinants of health, defined as “the conditions in which people are born, grow, work, live, and age,” is enormous. The National Academy of Medicine estimated that moving “upstream,” to implement interventions that prevent visits to the doctor’s office “downstream,” could cut health care expenditures by 20%. That’s $800 billion a year, or roughly seven times what the new infrastructure improvement law allocates to fix the nation’s roads and bridges.
With the Biden administration prioritizing health equity, the private sector could be a strong partner in using social determinants information to improve Americans’ health and wellbeing. Realizing that potential, however, leads to the second transparency challenge.
While some organizations have voluntarily pledged to collect and use data on social determinants of health in a “fair, unbiased, and scientific manner,” the pervasive secrecy means there’s no way to tell which companies, if any, are actually doing so. As Deven McGraw, a former top federal health privacy official, told me, “How do we make sure the uses of this are for the good, and who gets to decide that?”
For its part, the government has tried to collect data on social determinants of health by asking providers to interview patients during office visits. A patient’s care team can enter something called Z codes to report issues that may not be strictly medical, such as “problems related to social environment” or even “problems related to upbringing,” or problems for which extra outreach is needed. Given the time pressure on providers and the sensitivity of the questions, it’s no surprise that use of these codes has been minuscule.
In contrast, private-sector groups claim that analytics using consumer data, combined with the outreach it enables, are helping people live healthier lives while also reducing medical costs. Articles in trade publications and conference presentations suggest promising early results, including benefits from adding “protected” data such as medical record information to consumer information.
But hard evidence that would allow the private sector to become a trusted partner in health care is scarce. What consumer data now being collected is extraneous or might even introduce bias or inaccuracy? What’s the effect of including patient-reported information? What’s the impact of different algorithms? In other words, what works best?
These are critical questions that can be addressed while still protecting proprietary information. They are also questions that must be answered in order to protect the public from those who may be abusing this data as well as to accelerate whatever combination of technological innovation and old-fashioned listening proves most effective in improving people’s lives.
Congress should be asking some tough questions, but the administration doesn’t have to wait. Regulators could immediately begin pushing for transparency in Medicare Advantage, where the government will spend an estimated $343 billion in 2021. Requiring Medicare Advantage plans that use this type of data to disclose its use would be a significant signal, since these plans now cover 42% of Medicare beneficiaries, with the greatest enrollee growth among Black and Hispanic seniors. These are the groups that have historically suffered the most from secrecy in the health system.
Good intentions don’t excuse covert surveillance and evading outside scrutiny of decisions that affect millions of individuals’ health and billions of dollars in expenditures. For reasons both ethical and economic, it’s time to open up health care’s secret analytics and demand a transparency that so far has been markedly absent.
Michael Millenson is the president of Health Quality Advisors LLC and an adjunct associate professor of medicine at Northwestern University Feinberg School of Medicine.
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