Affected person Privateness Is Not Simply About Medical Ethics — It’s Important to Racial Fairness and Incapacity Rights

The confidentiality of patient-doctor communication is rightly a cornerstone of medical ethics and effective care – the information we divulge in the course of treatment is often highly sensitive, intimate, and insightful. We need rules to protect the privacy of patients who are up to the task of protecting them. That’s why we recently sent a letter to the Department of Health (HHS) opposed to proposed changes to the HIPAA privacy rule that would radically undermine patient privacy and facilitate the unnecessary disclosure of patient health information without their consent .

The touchstone of the HIPAA privacy rule is and should be patient consent. This is never more important than when there is a risk that patients’ protected information could be leaked to law enforcement, the family regulation system (sometimes referred to as the “child welfare system”), or other government actors. However, the rule change proposed by HHS in January of this year would disrupt patient consent in the privacy policy and lead to an increase in disclosures to law enforcement agencies and other problematic actors, putting more vulnerable patients in contact with systems that pose serious risks to their safety , and health. And while the harms associated with lower levels of privacy affect us all, it is most common to communities of color and people with disabilities. HHS has to reject this result.

This could look like this for patients:

JINNY

Jinny lives in a sober apartment building. Fearing discrimination, Jinny asks her therapist to keep her mental health history a secret. But according to the new data protection rule, the therapist passes the information on to the director of the sober apartment building. He throws Jinny out. Jinny lacks the resources to challenge the illegal eviction or seek redress.

HHS ‘proposal undermines privacy by lowering the standard that governs when providers can share proprietary information without patient consent in order to combat perceived threats of harm. Such a change is not supported and would lead providers to stick to the excessive disclosure side, especially in sensitive situations where patient privacy interests are paramount.

With our society already relying on the police to act as first responders in an absurdly wide range of circumstances, a worrying likely consequence of this change is an increase in the disclosure of patient information to law enforcement agencies. HHS should avoid this. Encounters with the police pose an increased risk for colored patients and people with disabilities. In fact, half of all people killed by the police have disabilities, including mental and other forms of disability. And the police use violence against blacks and browns more often than against whites. As the police murders of Daniel Prude, Walter Wallace Jr. and Deborah Danner (to name a few) show, the police are simply the wrong actors to intervene in mental crisis. The psychological and physical violence resulting from police intervention should make HHS very skeptical of proposals like this one. The HIPAA changes that HHS is proposing would open the door to better contact between vulnerable communities and law enforcement, thereby affecting individual and community health outcomes.

Weaker standards for the exchange of information under the Data Protection Directive are also likely to lead to more involuntary hospital stays, which will disproportionately affect people of color and people with disabilities. Even where involuntary arrests do not result directly from police involvement, they are traumatizing. Patients perceive involuntary imprisonment as stigmatizing and disempowering, they reflect the damage of arrest and criminalization and cannot relate it to adequate follow-up care.

The rules proposed by HHS would also open new channels for proprietary information from patients to reach the family regulatory system, even when there is no perceived emergency or impending danger. For example, HHS would specifically allow health care providers to share more than the minimum information required for “care coordination and case management” purposes, including with social services and home and community service providers. The medical records sometimes contain documentation of trauma, mental health diagnoses, domestic violence, family adversity, current or past drug use, and so on. Giving this information to social workers – who are often not tied to HIPAA at all – could spark invasive child protection investigations or keep families apart. There could also be reasons for housing providers or potential employers to refuse services to vulnerable communities, as we warned in 2019.

As with the police force, exposure to the family regulatory system is inherently risky as vulnerable communities are exposed to family separation, invasive government control, and other coercive measures. Families describe – and studies document – the fear, distrust, fear and stigma that result from the involvement of the family regulatory system. Black, indigenous and low-income families and parents with disabilities are hardest hit by this damage. Here is an example of how data protection regulation could exacerbate the dire damage to the family regulation system:

JEANETTE

Jeanette and her son, who has autism and needs special care, receive home support services from a Medicaid-funded provider. When Jeanette’s hospital records are disclosed to the provider through records disclosed in accordance with the amended privacy policy, they learn that she sometimes uses cannabis for self-medication. Jeanette’s provider calls the local family authority to report them, resulting in an unjustified and invasive “child safety check” and harmful month-long investigation that leaves Jeanette and her son suspicious, traumatized and reluctant to seek help in the future.

Rather than expanding the already extensive network of people with access to sensitive patient information, HHS should be careful to narrow the lines of sight between punishment systems and people seeking services and treatment.

In the limited circumstances in which providers are required to share patient information without their consent, the privacy policy already offers a lot of flexibility. On the other hand, in its proposal, HHS largely ignores the significant damage caused by compromised patient privacy. Indeed, the department does little to justify its proposed changes, instead promoting the benefits of reduced data protection for “efficient care coordination and case management” and citing vague anecdotes about “confusion” under current regulations.

The stated goal of HHS is to help people gain access to treatment – but this proposal would do the opposite by discouraging patients from access to the care they need and by exacerbating racial, disability and class differences. As mentioned, if the Biden administration really does prioritize justice, HHS must withdraw its proposed changes to the HIPAA privacy policy.

What you can do:

Get out of the police. Invest in communities.

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June 10, 2021 at 3:38 pm GMT

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