The Rising Health Data Leviathan: Health Information Gets Social
With social determinants of health, everything about you can be coded, tracked, and stored as health information - and directly accessed by the government for public health purposes.
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What’s in your medical records?
When you think of the information your health care providers collect and store, it’s probably things about your body that spring to mind: height and weight, blood test and screening results, information about surgeries, vaccinations, medications, and allergies.
If you’re on a medication for a psychological issue, like an SSRI or anti-anxiety drugs, there’s probably some information about your state of mind in your records. Maybe you’ve told a doctor you’re depressed or feeling stressed out, and that’s in there too.
If that’s your idea of the kind of information your health care providers track, you’re probably about right. For now. But soon, there could be a lot more information in your records. If you’re on Medicaid in the state of New York, soon probably means this year.
The kinds of information being added will be about aspects of your life that aren’t strictly medical but can affect your health—what you eat, what transportation you use, what kind of place you live in, what your family and social life is like, and more.
Because all of those things can affect people’s health, information about them will be integrated into our health records in the coming years. Health care programs and organizations will increasingly address those factors with social services and financial assistance. And the information will be stored in health information databases that are created by and accessible to government health departments.
The information collected will be basic at first, but the infrastructure for tracking an extremely granular data set on each individual is being created right now. As I mentioned in my last article, the health information system already has ways to track personal details like whether you get along with your neighbors. That’s just one of tens of thousands of details that specific codes exist for, and the code sets are continuously expanding.
Of course, there’s a significant upside to collecting lots of health information and making it easily accessible: Massive medical data sets could be analyzed by artificial intelligence tools to discover causes and cures for disease. AI could create customized health plans and treatments for each individual. The underlying causes for ill health in vulnerable populations could be identified and addressed more effectively than ever.
The downside? We’re building a health information infrastructure that lays the foundation for a system of totalitarian control. It will create an extensive file on every individual that is available to government authorities. That’s because when it comes to protecting personal health information, our privacy laws and regulations make a huge exception for public health uses.
Health information is the one area in which government authorities have the legal right to access your personal information without your consent and without any judicial approval process such as obtaining a warrant or subpoena. All that is required is for public health authorities to assert that they are acquiring your information for legitimate public health purposes.
The Social Determinants of Health
All of those non-medical aspects of life that can affect your health fall under the rubric of what public health policy experts call “social determinants of health” (SDH or SDOH).
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That term dates back to at least 1998, when the World Health Organization Regional Office for Europe published a 27-page booklet called Social Determinants of Health: The Solid Facts.
The booklet’s editors, British professors Michael Marmot and Richard Wilkinson, explained its basic premise: “People’s social and economic circumstances strongly affect their health throughout life.”
It’s a common-sense observation that people have been making for millennia without the benefit of a PhD: If you’re poor and lonely and you get kicked around a lot by the society you live in, you’re likely to be in worse physical shape than rich, powerful people with lots of friends. You probably won’t live as long as they will.
Marmot and Wilkinson break the problem down into ten parts in the booklet:
The Social Gradient: “Most diseases and causes of death are more common lower down the social hierarchy.”
Stress: “Continuing anxiety, insecurity, low self-esteem, social isolation and lack of control over work and home life have powerful effects on health.”
Early Life: “Important foundations of adult health are laid in prenatal life and early childhood.”
Social Exclusion: “Processes of social exclusion and the extent of relative deprivation in a society have a major impact on health and premature death.”
Work: “Stress in the workplace increases the risk of disease.”
Unemployment: “[u]nemployed people and their families suffer a substantially increased risk of premature death.”
Social Support: “Friendship, good social relations and strong supportive networks improve health at home, at work and in the community.”
Addiction: “Individuals turn to alcohol, drugs and tobacco and suffer from their use, but use is influenced by the wider social setting.”
Food: “A good diet and adequate food supply are central for promoting health and wellbeing.”
Transport: “Cycling, walking and the use of public transport promote health in four ways. They provide exercise, reduce fatal accidents, increase social contact and reduce air pollution.”
The booklet wasn’t just providing an analysis. Academics and other policy experts had been studying how social factors affect health outcomes for decades. The Solid Facts was a “call to decision-makers and public health professionals to address the social determinants.” It kicked off a campaign to get those decision makers and public health professionals to take action, led by the WHO Healthy Cities project in Europe.
“The timing of this effort is excellent,” wrote the head of the WHO’s European Centre for Urban Health in the introduction, “as it coincides with the launching of the renewed strategy health for all for the twenty-first century, the launching of phase III (1998–2002) of the Healthy Cities project and the increasing commitment of a number of cities to local Agenda 21.”
The social determinants of health were off to the races. By 2005, Marmot and Wilkinson had published a 376-page second edition of the booklet, and Marmot became head of the new WHO Commission on Social Determinants of Health (CSDH). The U.S. Department of Health and Human Services followed the WHO’s lead, calling for “[a]ddressing social determinants of health” in its 2010 Healthy People plan, published in 2000.
“Healthy People” is the federal government’s 10-year plan for improving Americans’ health. It lays out measurable public health objectives for each decade, then evaluates how close the country came to hitting the mark. Since its inception in 1979, it has taken a holistic approach to health issues and included social factors in its analysis. Now with its SDH focus, it has a much more powerful and refined way to address them.
The SDH framework of today remains similar to Marmot and Wilkinson’s 10-point list but has become even more expansive, encompassing just about every aspect of life you can think of.
Healthy People 2020 defined the social determinants of health as “the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks,” and Healthy People 2030 divides them into five broad categories:
The social determinants of health get top billing on the Healthy People 2030 website. Here’s U.S. Assistant Secretary for Health Rachel Levine talking about Healthy People 2030 and SDH:
(The fifth of Healthy People 2030’s five key areas is Social Determinants of Health, but you might notice that the first four—Health Disparities, Health Equity, Health Literacy, and Well-Being—sound an awful lot like SDH themselves.)
In November 2023, the White House Office of Science and Technology Policy’s Domestic Policy Council issued the first U.S. Playbook to Address Social Determinants of Health.
Its stated purpose is to serve as a “launchpad” for “addressing SDOH” through a “whole of government approach.” It lays out a national plan to do that, organized around three “pillars,” the first of which is “Expand Data Gathering and Sharing.”
I’m just giving you a brief history of social determinants of health and their rise to prominence in U.S. public health policy making here, to put New York’s health system overhaul in context.
I’ll get into the national and international context in greater depth in another article, although if you want to get a sense right now of just how appropriate the term “whole of government” is to describe the plan for SDH integration into a national health information network, you can take a look at the list of agencies and organizations involved in the effort in the Playbook’s appendices.
The key point I want to make here about the SDH framework is that it isn’t just an idea—the idea that social factors affect human health. It is an infrastructure blueprint. It’s a system for codifying every detail of human life so that it can be tracked and analyzed as data, and packaging the information so that authorities can use it to shape public policy.
New York is at the forefront of the government’s effort to do that.
Here’s how the state’s Department of Health presents the social determinants of health:
The Most Groundbreaking Public Health Program You’ve Never Heard of: New York Health Equity Reform
In January, New York State Governor Kathy Hochul announced the New York Health Equity Reform (NYHER) program. She called it “groundbreaking,” which it is. It’s a Medicaid 1115 waiver demonstration amendment, which is essentially a pilot program that doesn’t have to follow the standard Medicaid rules.
Years of planning and negotiations led up to the final approval of the program by the federal Centers for Medicare & Medicaid Services (CMS), and it’s backed by $7.5 billion in state and federal funding.
NYHER’s big innovation is that it integrates social determinants of health and related social services into Medicaid coverage. If you’re enrolled in Medicaid, you can expect to receive a survey or be asked some questions about your life when you go to the doctor’s or a social service provider, probably sometime before the end of the year.
The questions will be about social determinants of health—where you live, what transportation you use, how your relationships are going. (The survey will probably be similar to this Accountable Health Communities screening tool.)
Based on the answers people provide to those screening questions, they’ll be offered social services and financial aid. For eligible individuals, that can include anything from brokers’ fees and rent payments to food deliveries to money for covering the cost of transportation, furniture, or visiting friends and family.
While health care providers might have given Medicaid patients referrals to social services in the past, now all of their medical and social needs can be evaluated, addressed, and paid for under the NYHER Medicaid program. It’s at the forefront of the national movement toward integrating social determinants of health and social care into the medical system.
Information about medical and social needs will be collected and tracked by the same system, too. That system is the SHIN-NY, which I wrote about in my last article in this series. Changes to the SHIN-NY are being made in conjunction with the NYHER Medicaid program, bringing community organizations into the SHIN-NY network.
NYHER will establish new regional Social Care Networks (SCNs) of organizations that address Health Related Social Needs (HRSNs), with lead SCN organizations serving as regional hubs that collect SDH information and send it to the SHIN-NY.
A new group of hubs for SDH data analysis, called “Health Equity Regional Organizations” (HEROs) will aggregate data collected through the SHIN-NY to analyze SDH needs in specific regions and produce reports for the federal government that are required by Medicaid.
You can get an overview of how NYHER will work from this video:
Its advantages are clear: Having one big program that can identify and meet all of an individual’s needs will be more efficient and less costly than requiring people to deal with a patchwork of medical and social care providers.
Vulnerable people will be less likely to fall through the cracks between care providers or go without essentials like housing or food. And having regional umbrella organizations focused on identifying areas of need will make it easier to understand where to direct public funding and services.
But the scale of the infrastructure changes and investment also indicates that NYHER isn’t just a one-off experiment limited to providing care for the most vulnerable members of society. It’s a first step on the path toward state and then national integration of social and medical care—and social and medical data.
The infrastructure being built to store and send that data anywhere in the network will have lots of room for everyone, not just the neediest Medicaid recipients.
How Personal Information Becomes Data
Most people probably have a passing familiarity with medical coding. We all know that doctors and other health care providers put information in our electronic records, and that information gets assigned codes so that it can be communicated to insurance companies and other parties involved in health care.
There are several medical coding systems that are commonly used in the United States. ICD-10-CM (International Classification of Diseases, 10th Revision, Clinical Modification) codes are probably the most common. They’re a U.S. clinical classification system that is based on the international ICD-10 system.
Other coding systems include ICD-10-PCS (that’s ICD-10-Current Procedural Terminology), Healthcare Common Procedure Coding System (HCPCS), Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT), and Logical Observation Identifiers Names and Codes (LOINC).
All of those coding systems can be used by providers in their internal electronic health record (EHR) systems. When you see a doctor, information about you is entered into an EHR software system from a company like Epic, Cerner, or Allscripts. The software gives your doctor a structured format for entering the information, so that it can then be translated into codes from a medical code set. Once encoded, the information can be transmitted to insurers, other providers, and public health authorities.
Since there are so many different coding and EHR systems being used by providers, there also needs to be a way to connect them all up. That’s where Health Level Seven International (HL7) comes in. It’s an organization that creates data exchange standards, allowing entities that use different systems to share information. HL7 created the FHIR standard that I touched on in my article about the SHIN-NY.
When HL7 achieves its goal of total interoperability, all health information will be available in one smoothly running national EHR system—and then a global system. This process begins at the state level, with upgrades like the SHIN-NY’s implementation of FHIR. HL7’s ultimate goal is to “establish HL7 FHIR as the primary standard for global health data interoperability.”
FHIR is being rolled out by HL7 through initiatives that the organization calls “accelerator programs.” HL7 runs numerous accelerator programs devoted to promoting the implementation of FHIR in different areas of the sprawling health care, public health, and health research landscape, as well as advancing the use of value-based payment schemes. (I’ll have more to say about those in a future article.)
HL7 also has an accelerator program that is expanding the SDH coding vocabulary, creating new codes and submitting them for inclusion in code sets like ICD-10-CM and SNOMED CT. That accelerator program is called the Gravity Project.
SDH Code Set Building and the Gravity Project
If you’ve never taken a look at a medical code set like ICD-10-CM, you might be surprised at just how much medical coding includes and how detailed it can get. There are over 70,000 codes in just the ICD-10 code set.
Have you been crushed by a crocodile or struck by a duck? That would be ICD10-CM code W5813XA and W6162XA, respectively. Maybe you’ve been injured as a bystander in a legal intervention involving a bayonet (Y35412A) or you’ve got a magnet stuck in your left eye (H44652). The ICD10-CM code catalog has you covered.
There are plenty of codes for mental health issues too. ICD10-CM codes that begin with F describe all manner of psychological, behavioral, intellectual, neurological, and substance-use disorders. The R section lists symptoms that could have both physical and mental causes, from hiccoughs (R066) and sneezing (R067) to worries (R4582), unspecified hallucinations (R443), and plain old unhappiness (R452).
Many of the codes in sections covering physical and mental issues touch on social factors, but it’s in the ICD10-CM’s Z section that explicit descriptors of social determinants of health are being added.
Z codes were added to the ICD10-CM catalog in 2015, and they describe “Factors Influencing Health Status and Contact with Health Services.” The Z codes are what the Gravity Project is focused on, along with creating new SDH codes for other systems, like SNOMED-CT and LOINC.
They can track everything from whether you’re underachieving in school (Z553) or have a stressful work schedule (Z563) to whether you have problems related to living alone (Z602), unsheltered homelessness (Z5902), or transportation insecurity (Z5982).
Z codes can track your relationships too. You might be dealing with something as serious as seeking mental health services as a perpetrator of spousal or partner abuse (Z6912), or maybe you’re just experiencing some typical sibling rivalry (Z62891) or discord with your boss and workmates (Z564). The Z codes can describe all your interpersonal problems.
They can also codify more general social experiences, like social exclusion and rejection (Z604). Some of the latest proposed Z codes include:
Z60.5 Target of (perceived) adverse discrimination and persecution
Z60.50 Target of (perceived) adverse discrimination and persecution, unspecified
Z60.51 Target of (perceived) adverse discrimination and persecution, due to racism
Target of (perceived) adverse discrimination and persecution due to racial intolerance
The Z codes also dip their toe into codifying personal beliefs. For example, if you didn’t accept a recommended vaccination, that could be coded as Z281: “Immunization not carried out because of patient decision for reasons of belief or group pressure.” Perhaps your health care provider will recommend spiritual or religious counseling (Z7181). The ICD-10-CM system encodes diagnoses and recommendations, not just symptoms and conditions.
If you want to flesh out your picture of a person’s beliefs a little more, SNOMED-CT and LOINC offer more options. SNOMED-CT provides an extensive code set for religious beliefs, including not only specific religious groups, roles, and activities, but also seven levels of religious observance, from lapsed (224082009) to fanatical (224081002).
If your spiritual beliefs conflict with your healthcare plan, that’s code 422930008. There are other codes to indicate when beliefs come into conflict with health care or other actions, including moral distress (422838000) and spiritual distress (26110006).
You can take a look at the current Z codes and the rest of the ICD10-CM code set here and browse through the SNOMED-CT and LOINC codes for yourself. Whatever your conditions, quirks, relationships, and beliefs, you’re sure to find a set of codes that will paint an extremely detailed picture of yourself and your life.
When the HL7 dream of global interoperability is achieved, your doctor and whoever else has authorized access will be able to add new details to that picture and send it anywhere in the world it needs to go in a snap.
I think it’s important to note at this point that it’s not necessarily nefarious for health care providers to want to know about their patients’ beliefs, especially religious beliefs. Knowing that a patient’s religion includes certain prohibitions or requirements could help providers tailor care to those needs.
Maybe you want your doctor to know not to prescribe you pills that use certain animal products or you want to receive last rites. Having that information in the records that travel with you wherever you go in the health care system could ensure that your beliefs are respected, even if you’re too ill to communicate them.
Having information about your social circumstances in your health records promises to make delivering care more efficient and effective too. I’ve watched enough New York public health bureaucrats slog through webinars and meetings to see that their intentions are good. It’s obvious that they want to create a better system for providing care and helping people in need.
But the potential for misuse of such an all-encompassing, centralized system should also be obvious. The Gravity Project is not the only entity generating new SDH codes, but the fact that it is a project created by the premier organization driving global health data interoperability just underscores how inextricably linked the effort to expand the information collected about each of us is to the effort to make that information available not just to doctors but to public health authorities everywhere.
In the United States, public health authorities have broad powers to access personal health information, and not just during an emergency. Once the information has been collected and stored in a networked digital repository, there is very little standing between your personal information and any public health authority who wants access to it for a public health activity.
Yet there has been no public discussion—and scant awareness—of the fact that we’re creating a system for putting vast troves of extremely granular information about every individual in the hands of government authorities. There has been no discussion about the legal guardrails or updates to privacy rules that could be put in place.
Where Does Personal Health Information Come From?
So far, I’ve talked about the usual ways information makes its way into your medical records: You talk to your doctor or a nurse. You fill out forms and get lab tests and prescriptions and procedures, and information about all of those things goes into your medical records.
As SDH information gets integrated into the EHR system, you’re likely to see more standardized surveys being used to collect information about your life that isn’t strictly medical. A broader range of providers will enter information into EHR records, including community organizations, social services providers, and school staff members.
But the information that comes from those personal encounters may not be the only source for your records soon. Consumer data vendors are also in the health information business. You might think of Experian, for example, as a financial services company that deals with credit scores, but it also has a whole division that handles health information.
In a 2019 webinar called “Achieve Better Care Management by Addressing the Social Determinants of Health,” Experian Health Senior Product Manager Mindy Pankoke discusses the value of SDH data for patient care and the ways it can be provided to health care providers.
Pankoke presents a model patient called “Vern.” Vern is an older man with a low income who lives alone in the inner city and hasn’t had a checkup in six years. He considers himself healthy and doesn’t like going to the doctor, but he had some type of heart-related episode that landed him in the emergency room.
Vern got a diagnosis and a care plan for his heart condition in the ER, but the Experian Health webinar explains that social determinants of health might prevent him from following it: He might not have the money or transportation required to get the nutritious food and medication he needs. He’ll probably end up back in the hospital as a result.
There’s another problem with Vern: He doesn’t seem likely to tell the ER doctors about his situation or fill out patient questionnaires, so they won’t even know that they should refer him to programs that could help him overcome the social barriers to getting the care he needs. “His perception was that he’s healthy and doesn’t need a doctor’s appointment,” Pankoke explains.
That’s where Experian Health comes in. The hospital system can purchase SDH data from them for everyone in their service area and match it to individuals who show up in the ER. The data has been purchased by Experian Health from consumer sources like online retailers, entertainment sites, and social media, and packaged for sale to health care providers.
If Vern’s hospital had bought an SDH data set from Experian Health, all the information about his income, transportation options, and other personal circumstances would already have been in his medical records when he arrived. Vern himself wouldn’t have to tell the ER staff anything—they would already know all about him!
For health care providers, offering social services that will support patients’ adherence to care plans saves money. In the Experian Health webinar, Mindy Pankoke explains that when the Montefiore system in the Bronx identified 4,000 high-risk patients and connected them with housing and other social services, Montefiore saw a drop in emergency department readmissions that brought them a 300% return on their investment in the program over six years.
So there’s an incentive for health care providers to bring consumer data into their EHR system to fill out SDH information. Having it will likely improve patient care and cut costs, especially for the most vulnerable populations, like those who are homeless, mentally ill, or living in poverty.
Creating a Path to Health Departments for Consumer Data
The integration of consumer data into medical records will accomplish something else that is unprecedented, aside from creeping out people like Vern when he discovers the hospital staff knows all kinds of things about him that he hasn’t told them. It will open a portal for the government to access an extensive collection of consumer data—no warrants, subpoenas, or emergency declarations required.
Yes, there are some limits and requirements involved. Mindy Pankoke explains in the webinar that in order for Experian Health to collect and sell consumer data, individuals have to consent to their information being stored and sold by the consumer sources that first collected it, and they have to be provided a way to opt out of that consent. Privacy laws are complex and vary by state, so there could be other factors involved.
Here’s how I see the process working in New York once the SHIN-NY overhaul is complete:
You consent to your information being collected by a gazillion consumer websites and apps during years of your life, with the click of a button each time.
All of the consumer information collected by those sites gets bought by a data vendor like Experian Health.
The data vendor sells consumer data related to social determinants of health to your local health care providers, which are connected to the SHIN-NY.
The New York State Health Department now has perfectly legal access to consumer data that has been integrated into your medical records and stored in the statewide repository.
If you’re wondering whether it’s likely that data vendors who sell consumer information to health care providers have your information, the answer is almost certainly yes. According to the Experian Health webinar, Experian has consumer data for 98% of the U.S. adult population.
Another thing you might ask is whether a company like Experian, which is best known for its consumer credit scores, has considered using a scoring system for individuals’ SDH information.
Why yes! In the webinar, Mindy Pankoke points out that while Experian and other consumer data vendors can provide hundreds or thousands of data points on each individual, that leaves health care providers to sift through the information and take a “DIY approach” to using it.
What’s more effective, she says, is using the kind of health information scores that Experian can provide, which she calls “more than a score.” That means each individual isn’t just assigned a single number based on SDH data. Instead, individuals have a score that’s accompanied by some supporting information so that providers can distinguish, say, someone who got an 8 for needing housing from someone who got an 8 for needing food.
The creation of such scoring systems for the growing troves of personal information being collected in government-accessible “medical” records is just one reason why our “health information” system is the top candidate for becoming an American social credit system.
In the next article, I’ll get into more detail about how that could happen.
Coming next in this series: How Your Health Information Could Become Your Social Credit Score
Go back to The Rising Health Data Leviathan: New York's Shiny New SHIN-NY
