SDOH & The Emerging Surveillance Apparatus — Part I

Your Child’s Social Determinants of Health Could be Used Against You

Data that can influence things you never thought possible…

Dez Nelson
Nov 6, 2019 · 16 min read

Social Determinants of Health or SDOH is a relatively new term that’s been spreading within the discourse of late in healthcare circles.

SDOH is a new all-encompassing model that’s being integrated into the current healthcare model, and it’s driving the evolution of the industry as well as public health practice globally. Innocuous as this may sound, there are some serious privacy and other concerns with this new model. Privacy laws such as HIPAA simply don’t apply in many cases and predictive analytics leveraging SDOH could be used to discriminate. Integrating SDOH isn’t just being proposed, it’s already being implemented in the healthcare industry, public health practice, and initiatives, and even in big-tech and big-data circles (and subsequently, their product lines as well).

A troubling system of surveillance is emerging in the US with public/private partnerships and these collaborations are affecting both public schools and healthcare in general among other aspects of life. Even the private information of parents with school-age children, such as analgesic medication history, is being scooped into the mix which we’ll explore in detail below. However, first, we need to define our terms.

What exactly is SDOH? The World Health Organization defines it as follows:

‘The social determinants of health are the conditions in which people are born, grow, live, work and age. These circumstances are shaped by the distribution of money, power and resources at global, national and local levels. The social determinants of health are mostly responsible for health inequities — the unfair and avoidable differences in health status seen within and between countries.’[1]

Essentially, this is a global effort, but we’re just going to discuss the United States.

SDOH in the United States

SDOH is being implemented both in the consumer healthcare sector and by government-subsidized payers like Medicaid and Medicare, and it’s also becoming a focus for employers.

‘Collaborating with public health and community organizations to foster informed decision-making can help Medicaid entities better address the social determinants of health (SDOHs), says new guidance issued by the National Quality Forum (NQF).’[2]

‘An expert panel assembled by NQF found that Medicaid programs are well positioned to positively impact food insecurity and housing-related SDOH among their beneficiary populations, but only if they work closely with other organizations in their communities.

The panel additionally found that many Medicaid programs have the capability to collect SDOH data and could effectively capture SDOH data with input from NQF members, the public, and community leaders.

“We know that what really affects health and health outcomes is where and how people live and work,” said Shantanu Agrawal, MD, the President and CEO of NQF. “This project, which is part of NQF’s Health Equity initiative to reduce health disparities, offers Medicaid programs a strategic blueprint to address social needs that affect people’s’ health.”’[2]

Below is one visual representation of SDOH. Some of the indicators on SDOH charts, in general, are disturbingly penetrating and could result in serious issues for Americans if not properly regulated:

Image: National Quality Forum [3]

Some other SDOH factors include:

Genetics, medical, behavioral, housing status, physical environment, income and social status, health education, social support networks, water and sanitation, work environment, agriculture and food production, age, sex, constitutional factors, healthcare services, unemployment, individual lifestyle factors, social and community factors, living and working conditions, access to healthy foods, physical activity, incarceration, obesity, health problems, mental illness, low birth weight, homelessness, access to transportation, access to healthcare, healthy environment, quality education, good-paying jobs, affordable housing, and safe neighborhoods.

As you can see, it’s all-encompassing. Every aspect of life, to the most minute detail, is included as a metric for measuring ‘health’ and potential outcomes. This information will also be leveraged for predictive analytics which we’ll discuss in-depth in the future, but as was mentioned in Emerging Technology & Deregulation: What it Means for a Free Society and Human Rights Violations & The Rise of Universal Ethics Guidelines, deregulation is driving some concerning changes in the American regulatory apparatus.

Social Determinants & The Mandated & Meaningful Use of Electronic Health Records

SDOH is immersive and because the electronic health record (EHR) is not simply for curating medical data, ‘health’ in this instance is all-encompassing, your ‘social determinants’ will absolutely be tracked in the EHR; whether you like it or not. The implementation and use of standardized EHR’s by medical practices were mandated by both the Affordable Care Act and the HITECH Act.

Ever been arrested or incarcerated? That kind of information may be included in your health record (among other places such as the Prescription Drug Monitoring Program or PDMP) and with the advent of ‘predictive analytics,’ which I briefly introduced in Discrimination Based on History Coded into HIT System, that information will be part of what decides your care when you go to your doctor's office. A lot of this is based on opaque proprietary algorithms that find patterns in your history, whether they’re immutable characteristics or other social determinants, and often, there’s no context provided that may explain details. Sometimes the lack of context can cause a pharmacist to deny filling a prescription, or a doctor may decide he doesn’t want to treat you because you’re perceived as too risky to take on.

We’ll discuss that much more in the future, but one thing is clear, people’s immutable characteristics and socio-economic indicators and status will be used to decide their risk level for certain conditions or potentialities as well as course of treatment, and most of the time, patients aren’t given access to the information that’s being leveraged to make those decisions.

SDOH will also be used within the public school system with help from the U.S. Department of Education via the Federal Commission on School Safety.

The Federal Commission on School Safety

This commission was set up within the US Department of Education (ED) and they have some rather extraordinary plans for America’s public school system in the wake of some high profile instances of school violence.

‘In March 2018, President Donald J. Trump appointed U.S. Secretary of Education Betsy DeVos to lead the Federal Commission on School Safety. The Commission has been charged with quickly providing meaningful and actionable recommendations to keep students safe at school. These recommendations will include a range of issues, like social emotional support…and the impact that videogames and the media have on violence.

There is not one plan that fits all schools across the country, so the Commission will be focusing on all variations of school size, structure, and geographic locations with their final recommendations. Input from Commission meetings, listening sessions and field visits will all be considered. Meetings and correspondence with students, parents, teachers, school safety personnel, administrators, law enforcement officials, mental health professionals, school counselors, security professionals and other related stakeholders will be critical to the Commission’s work as well.’[4]

The commission consists of four members

Images: Federal Commission on School Safety[4]

In the commissions’ 2018 final report, suspicious activity is discussed at length.

Under the heading ‘Using Suspicious Activity Reporting and Threat Assessments to Enhance School Safety’ a 2002 study was cited that communicated the following:

‘Incidents of targeted violence at K–12 schools were rarely sudden or impulsive acts.

Prior to most incidents, other people knew about the attacker’s idea and/or plan to attack.

There is no accurate or useful “profile” of students who engaged in targeted school violence.

Most attackers engaged in some behavior prior to the incident that caused others concern or indicated a need for help.

Most attackers had difficulty coping with significant losses or personal failures. Moreover, many had considered or attempted suicide.

Many attackers felt bullied, persecuted, or injured by others prior to the attack.

In many cases, other students were involved in some capacity.’[5]

The report goes on to state: ‘Visible public awareness messaging campaigns increase vigilance and reporting of suspicious behavior. Successful campaigns, such as the “If You See Something, Say Something®” campaign, typically perform outreach through multiple means, both physically and online.’[5]

The Nationwide Suspicious Activity Reporting Initiative and the ‘See Something, Say Something’ campaign are programs that school administrators and other officials are being encouraged to model reporting campaigns after within public schools. Should there be reporting structures in place if students or faculty feel unsafe? Sure, absolutely, however, current efforts seem like a slippery slope and we’ll explore why momentarily.

The commission itself also seems very heavily influenced by law enforcement which I’m not sure is totally appropriate, however, it’s the plan they’re putting in place that’s creating the most concern. The report goes on to say:

‘In addition, HHS and ED have begun initial planning for the Safe School and Citizenship Education demonstration program (referenced in the Joint Explanatory Statement of the Consolidated Appropriations Act, 2018).7 With the goal of providing and expanding mental health services in low-income public elementary schools and secondary schools, the program is designed to test and evaluate innovative partnerships between institutions of higher education and states or high-need local educational agencies to train qualified school-based mental health service professionals.’[5]

The Three ‘Key Mental Health Issues: Access, Privacy, & Civil Commitment’

There are three key mental health issues that were communicated in a cabinet meeting that was held in August of 2018 that have everything to do with implementing the above-mentioned demonstration program (which will likely be rolled out nationally) and they were: access, privacy, and civil commitment. For now, we’re only going to focus on the first two but remember, mental health and behavior are considered social determinants of health and we’re about to see how the SDOH model is being implemented at the institutional level.

America's children will be expected to provide information on their social determinants at school, specifically in regard to mental health indicators.

As was communicated in the 2018 ED report and at a cabinet meeting, there is a new push to build capacity for Certified Community Behavioral Health Clinics (CCBHCs) in American schools.

Secretary Azar, who is the Secretary of Health & Human Services (HHS), goes on at length about the federal government’s plan to integrate mental health care with the public school system. If you fast forward the below video to 24:35, this is where Azar talks about increasing services within public schools.

Remarks: Donald Trump Holds a Cabinet Meeting at The White House[6]

In regard to access to these services within the school system, Azar states, ‘we learned how integrating services into schools is ideal, it can really decrease stigma and meet the kids where they are. We learned that one in five youth suffer from some form of mental disorder, but half of them are not getting treatment for it. We learned that school-based care leads to improved grades, better attendance, health, and mental health care and outcomes.’

What we don’t know based on this one field visit he took to a Wisconsin middle school, is how outcomes are tracked. Considering this has been an ongoing issue with federal public health interventions in general (i.e. there is no tracking of patient outcomes when it comes to many public health initiatives), it may be beneficial to find out how these outcomes will be tracked before this intervention is fully implemented. In fact, it may be prudent to ask if this type of intervention is appropriate at all in this setting. It may be one thing to ensure that children that actually need help have appropriate access to it if their parents feel it’s warranted, but this plan appears far more likely to result in specific information being released or used against the child or their parents which then creates ‘justification’ for increased intervention.

This plan includes netting children’s parents and other family members into the mix if school clinical staff or officials feel they’re ‘at risk for addiction’ and other ‘mental health problems.’ To give you an idea of how Azar brought up and views privacy issues, this is a quote from the meeting when discussing access to these services at school:

‘Where do our privacy rules get in the way of kids getting care? Where do they get in the way of teachers and administrators reporting children who need help? Where do they get in the way of family members getting the care that their other family members need?’

‘On privacy, we learned how misunderstood the rules are and how often over-counseled and over, over-interpreted those rules are.’[6]

As you can see, it’s not just children that will be subject to this new system of surveillance at school, it’s also their family members. This is all part of the push to capture social determinants of health. It’s of import to note that school officials, doctors, and many other professionals are mandated reporters which means that if they feel your child is ‘at risk for addiction,’ if they think there’s a possibility of substance misuse or abuse in the home, or neglect or child abuse, they’re required by law to report their suspicions to social services; whether the risk is real or not. While children absolutely should be protected from abuse and neglect, this kind of program seems overly penetrating for a public school campaign.

Please note that parents in schools outside of this demonstration program are also being asked inappropriate questions related to medication or substance use in some parts of the country.

This image was sent to me by a concerned parent in Maryland:

Source: Confidential — Personally-Identifying Information Redacted for Privacy

As far as I can discern based on my research, Maryland is not one of the states that have been selected for the demonstration program, yet parents are being asked if they’re currently using opiate-based or illicit substances. Remember, school officials and the like are mandated reporters and with the state of emergency surrounding the overdose crisis, it’s difficult not to wonder whether these types of questions are part of a red flag program to initiate further state intervention into Americans’ lives. This would certainly go a little way to ‘justify’ the trillions being spent on the war on drugs, specifically if it could be demonstrated that this type of invasion of privacy is ‘for our own good’ and is ‘saving lives.’

Except, privacy is of extreme import in the tapestry of American culture, however, it’s being eroded in what appears to be a systematic effort. Azar himself seemed almost irreverent about the privacy issues created by such a plan. Many regulatory protections have also been, and continue to be, manipulated by federal agencies. I’ve written about some of those changes in regard to health protections and we’ll discuss these issues more in-depth but there will likely be some very serious changes to privacy laws in the coming year, they just may not be the kinds of changes that benefit the American people.

Applicable Privacy Rules Aren’t So Applicable

There are a couple of important rules that ‘apply’ when it comes to clinics like these within schools, the Health Insurance Portability and Accountability Act (HIPAA), and the Family Educational Rights and Privacy Act (FERPA). It’s important to recognize however that HIPAA is not as protective as one may think.

Under frequently asked questions in the Joint Guidance on the Application of the Family Educational Rights, it asks and answers the following:

Does the HIPAA Privacy Rule apply to an elementary or secondary school?

‘Generally, no. In most cases, the HIPAA Privacy Rule does not apply to an elementary or secondary school because the school either: (1) is not a HIPAA covered entity or (2) is a HIPAA covered entity but maintains health information only on students in records that are by definition “education records” under FERPA and, therefore, is not subject to the HIPAA Privacy Rule.’

‘The school is not a HIPAA covered entity. The HIPAA Privacy Rule only applies to health plans, health care clearinghouses, and those health care providers that transmit health information electronically in connection with certain administrative and financial transactions (“covered transactions”). See 45 CFR § 160.102.’

‘The school is a HIPAA covered entity but does not have “protected health information.” Where a school does employ a health care provider that conducts one or more covered transactions electronically, such as electronically transmitting health care claims to a health plan for payment, the school is a HIPAA covered entity and must comply with the HIPAA Transactions and Code Sets and Identifier Rules with respect to such transactions. However, even in this case, many schools would not be required to comply with the HIPAA Privacy Rule because the school maintains health information only in student health records that are “education records” under FERPA and, thus, not “protected health information” under HIPAA. Because student health information in education records is protected by FERPA, the HIPAA Privacy Rule excludes such information from its coverage.’[7]

So, HIPAA doesn’t apply, at least not when it comes to the privacy aspect of HIPAA. Please note that this demonstration program is specifically tailored to elementary and secondary schools. Why the ED even tried to imply that HIPAA would protect student health information is now completely beyond comprehension.

Here’s a confused monkey. Image: Unsplash

The ED asked parents and school officials to look to HIPAA and FERPA for privacy protection but their FAQ on a completely different website basically says that it’s really only FERPA that ‘protects’ kids’ private health information. This sounds a lot like circular reasoning to me but let’s take a look at FERPA.

‘At the elementary or secondary school level, students’ immunization and other health records that are maintained by a school district or individual school, including a school-operated health clinic, that receives funds under any program administered by the U.S. Department of Education are “education records” subject to FERPA, including health and medical records maintained by a school nurse who is employed by or under contract with a school or school district. Some schools may receive a grant from a foundation or government agency to hire a nurse. Notwithstanding the source of the funding, if the nurse is hired as a school official (or contractor), the records maintained by the nurse or clinic are “education records” subject to FERPA.

Parents have a right under FERPA to inspect and review these health and medical records because they are “education records” under FERPA. See 34 CFR §§ 99.10–99.12. In addition, these records may not be shared with third parties without written parental consent unless the disclosure meets one of the exceptions to FERPA’s general consent requirement.’[7]

So the health records are ‘education records’ and they don’t fall under the HIPAA privacy rule.

Alright, then who can access these ‘education records’ under FERPA?

‘The Family Educational Rights and Privacy Act (FERPA) (20 U.S.C. § 1232g; 34 CFR Part 99) is a Federal law that protects the privacy of student education records. The law applies to all schools that receive funds under an applicable program of the U.S. Department of Education.’

‘Generally, schools must have written permission from the parent or eligible student in order to release any information from a student’s education record. However, FERPA allows schools to disclose those records, without consent, to the following parties or under the following conditions (34 CFR § 99.31)

School officials with legitimate educational interest;

Other schools to which a student is transferring;

Specified officials for audit or evaluation purposes;

Appropriate parties in connection with financial aid to a student;

Organizations conducting certain studies for or on behalf of the school;

Accrediting organizations;

To comply with a judicial order or lawfully issued subpoena;

Appropriate officials in cases of health and safety emergencies; and

State and local authorities, within a juvenile justice system, pursuant to specific State law.’[8]

This is unacceptable. These are pitiful ‘protections’ and a remedy should be sought immediately. The author encourages parents across the country to inquire about these types of programs in their state. Those with sharp legal minds should also be aware of these programs and seek to ensure that kids and their parents are protected from unwarranted intrusion.

Summary

Serious loopholes remain in privacy laws that are supposed to protect personal and health information and despite the push to include extremely sensitive socio-economic data in health records via SDOH, more slashes to privacy rules are expected over the next couple of years. SDOH is also being proposed and demonstrated at the institutional level such as at public schools where privacy issues become even less clear.

Conclusion

If you have concerns about the Department of Education’s demonstration program that will likely be rolled out nationwide after the pilot phase, please feel free to email the Federal Commission School Safety team at safety@ed.gov.

We covered two of the three ‘key mental health issues’ that Secretary Azar of HHS communicated in the 2018 cabinet meeting. In the next part of this series, we will discuss the third, civil commitment. Civil commitment is the involuntary confinement of an individual in a mental health facility.

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References:

[1] About social determinants of health — https://www.who.int/social_determinants/sdh_definition/en/

[2] NQF Aims to Improve Medicaid Use of Social Determinants Data — https://healthpayerintelligence.com/news/nqf-aims-to-improve-medicaid-use-of-social-determinants-data

[3] NQF Food Insecurity and Housing Instability Final Report — http://www.qualityforum.org/Publications/2017/12/Food_Insecurity_and_Housing_Instability_Final_Report.aspx

[4] Federal Commission on School Safety — https://www.ed.gov/school-safety

[5] Final Report of the Federal Commission on School Safety — https://www2.ed.gov/documents/school-safety/school-safety-report.pdf

[6] Remarks: Donald Trump Holds a Cabinet Meeting at The White House — August 16, 2018 — https://www.youtube.com/watch?v=mNddZ4cwzRU

[7] Joint Guidance on the Application of the Family Educational Rights and Privacy Act (FERPA) And the Health Insurance Portability and Accountability Act of 1996 (HIPAA) To Student Health Records — https://www2.ed.gov/policy/gen/guid/fpco/doc/ferpa-hipaa-guidance.pdf

[8] Family Policy Compliance Office (FPCO) Family Educational Rights and Privacy Act (FERPA) — https://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html


Dez Nelson is a former Environmental Health & Safety professional, Human Rights Advocate, Founder and Executive Director for the National Advocacy Access Clinic (NAAC), and Owner & Editor of The Compendia Project. You can follow Dez on Twitter here or you can visit NAAC here.

© National Advocacy Access Clinic (2016- 2020) All rights reserved. Content does not constitute a medical consultation or legal advice. Please see a certified medical professional for medical advice or consult an attorney for legal advice.

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Dez Nelson

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Writer, Researcher, Human Rights Advocate, & former EH&S professional. In the process of writing my first book.

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