The 9-1-1 Information Gap

In the United States — and large parts of the world — the 9-1-1 system is the principal way public safety and medical resources are deployed in response to emergencies, including mental and behavioral health crises. The system evolved at the confluence of three technological developments that rapidly spread in the wake of World War II: the omnipresence of the telephone, the widespread use of the automobile, and the availability of wireless radios. The latter, which had gotten much smaller and more powerful during and after the war, could thus be used to dispatch roving police units to citizens’ calls for service. In 1967, the President’s Commission on Law Enforcement and Administration of Justice recommended a single phone number be used across jurisdictions for this purpose.Reference Neusteter, Mapolski, Khogali and O’Toole ¹ The 9-1-1 system was born.

Behind the modern 9-1-1 system’s computer-aided dispatch lies a vast electronic records management network with federal, state, and local databases that not only record data about incidents as they unfold, and house the resulting reports, but provide access to the information necessary for a safe and effective first response. This includes information about past incidents at a location, who may be wanted for a crime, and people wanted for questioning. This knowledge can be used to help assess the risks of response to an incident and assist in investigations, but it provides little by way of helping police and other first responders react quickly and effectively to mental and behavioral health emergencies. In their paper in this issue of Journal of Law, Medicine & Ethics, Heather M. Ross, Diana M. Bowman, and Jessica M. Wani make the case that these systems can be linked to a voluntary registry to provide police with critical information about people with dementia.Reference Ross, Bowman and Wani ² Should they wander and become lost, for example, police can gain immediate access to their physical description, diagnosis, habits, historical routes of travel, and locations where caregivers have found them in the past. They would be better equipped to find the person, safely engage them, and quickly link them to care. Such registries could potentially fill critical gaps in the nation’s 9-1-1 system, and for that reason they are overdue.

Voluntary Registries: The Right Information at the Right Time

The 9-1-1 system delivers speed and efficiency, but with it comes some limitations: police and paramedics are by nature generalists, emergencies can be complex and evolving events, and both callers and call-takers are imperfect at identifying all relevant particulars of a crisis and bringing the most relevant information to the fore. In the event of mental health crises, the results of an information gap can have profound consequences when police attempt to intervene. The result can be an arrest when linkage to treatment would be more effective at both protecting health and preventing repeat occurrences. It could also mean mistaking the temporary effects of a crisis for resistance, obstruction, or a deliberate intention to cause harm, resulting in use of force rather than containment and de-escalation. In the case of an Alzheimer’s patient gone missing, as discussed in Ross et al.’s piece, delaying a properly focused search directly contributes to their risk of death.

Voluntary registries can help fill these information gaps if they are implemented with an eye toward privacy, professionalism, and equity. One of the authors of this commentary (MTC) is conducting a trial in Georgia in which individuals with serious mental illnesses can opt into a database that links police to mental health clinicians by phone.Reference Compton ³ When officers encounter someone at the scene of an incident, pull someone over, or simply happen upon someone during routine patrol, and query their name — a nearly universal step in police procedure — they are prompted to make the call. This practice, which provides police with real-time insights about the person’s condition, and the mental health diagnoses that may explain their behavior, is being tested in terms of effectiveness at linking these patients to care in the context of a police contact, while reducing the risk of arrest for minor charges. Police have broad discretion in making arrests versus referrals for a wide range of situations,Reference del Pozo, Sightes, Goulka, Ray, Wood, Siddiqui and Beletsky ⁴ and the information officers receive from clinicians can help them distinguish between criminally destructive or disruptive behaviors and the results of a mental health condition or crisis (or psychosocial need) that would benefit from reconnection to care rather than criminal legal system entanglement. Complementing such a system with a dementia registry would be the beginning of a continuum of improved mental health first response by providing timely and accurate information about an incident’s underlying origins and the most appropriate courses of action.

Privacy, Confidentiality, and Stigma

There is a tension inherent in voluntary registries that seek to put sensitive medical information into the hands of police and other first responders, however. On one side is the value proposition that it reduces the 9-1-1 system’s information gap when time is of the essence, speeding a decisive response when units arrive and begin their investigation. On the other is the worry that law enforcement will fail to safeguard or will otherwise misuse information about a person’s mental or behavioral health condition. Acknowledging one’s status as a person with a mental illness is stigmatizing, and law enforcement officers may lack the skills and procedures to make the best use of the information. These concerns must be addressed for registries of various types to succeed.

In response to the legitimate desire to protect the widespread disclosure of a patient’s health information, Ross et al. make an important point, one that we feel is worth emphasizing: HIPAA privacy laws don’t apply to voluntary registries maintained by police, and the common belief that they do is a misunderstanding. Police routinely collect information about people that pertains to their health, from reports of overdose and the outcomes of mental health crises to the injuries sustained during motor vehicle crashes and other routine accidents that require a preliminary investigation. Indeed, when a person with dementia goes missing, the ensuing police reports are bound to contain detailed clinical information that would be HIPAA protected if it were in an electronic health record. But as data not held by health care providers, it is not governed by HIPAA, and neither would data voluntarily provided by people with dementia in advance of a missing person incident. In jurisdictions without registries, when a person with dementia goes missing more than once, it is past reports that can provide officers the information necessary for a fast, effective response. This is a legitimate use of the patient’s health information, regardless of how it was initially obtained by police.

Compromise of this information is another concern, but police trade in sensitive information by the nature of their work, and have constructed their systems accordingly. One answer lies in utilizing the safeguards already in place for housing sensitive information in police facilities. The FBI requires municipal police departments to comply with its Criminal Justice Information Service security requirements, ⁵ which restrict who can access information and what it can be used for, and requires an audit trail for all transactions. It also spells out the physical and cyber security standards for the servers and other hardware that maintain and provide access to sensitive criminal justice information. Applying this standard to personal health information (PHI) as well, such as the information contained in voluntary registries, would provide the level of security otherwise reserved for data used in highly sensitive criminal investigations. Not only would this in effect render the data secure, but would demonstrate an agency’s practical commitment to protecting the privacy and the dignity of people who entrust their information to the police in order to improve the 9-1-1 response to mental health crises.

At the same time, stigma toward people with mental health conditions is real, dementia is not an exception,Reference Herrmann, Welter, Leverenz, Lerner, Udelson, Kanetsky and Sajatovic ⁶ and distrust of the police by vulnerable populations subjected to a history of discrimination and racism cannot be ignored. One response proposes to therefore see the police out of these situations altogether, and replace them with clinicians who specialize in mental health crisis response. It is important to consider, however, that the information contained in these registries is agnostic regarding its user. Anybody responding to a person in need would benefit from it, police or otherwise. As alternative responders, however, people specifically acting as health care providers (i.e., “covered entities”) may ironically trigger HIPAA protections that would impede the transfer of critical information between actors unless it was obtained from a voluntary registry that waived the corresponding protections. As it stands now, police, who are not covered entities, can share PHI without prior permission, as needed or as an incident unfolds.

There are also practical concerns about diminishing the police role in certain incidents. In the case of a registry for people with dementia, where one of the primary purposes is quickly returning lost people to their caregivers, it is unlikely that even the most reform-minded communities will develop an effective alternative to police investigations and searches. The use of aviation, canines, sensors, and a fleet of vehicles, among other tools and technologies, ⁷ provide police with the specialized equipment and staffing necessary to conduct fast and thorough searches more so than any other agency or group, and it all comes at great expense. So long as first responders are dispatched to crises when people call, registries will benefit any responder regardless of their role, and it is unlikely that police will be replaced when the response is to emergencies that have an element of actual physical danger or call for resource-intensive searches or containment practices.

The First Steps Toward Comprehensive Reform

The introduction of voluntary registries to enhance emergency response to patients with Alzheimer’s disease and other forms of dementia may prove to be a valuable test case, and a stepping stone for the expanded use of this proactive approach. People with dementia are perceived to be acutely vulnerable, and unlikely to be aggressive, dangerous, or involved in activities that could be considered crimes. Their condition is stigmatized, but their advanced age most often inspires compassion. If anything, they are stereotyped as being helpless but largely harmless. This suggests that their presence in a registry is unlikely to evoke stereotypes in first responders that put them at an elevated risk of arrest or subject to a forceful response. As the ethics of privacy and the need for information security are addressed, registries for this population seem to have little downside, and can reduce the considerable burdens faced by their caregivers.

One critical observation is that information alone only goes so far. It needs to be accompanied by the resources, training, and procedures to make the best use of it. In the case of registries for dementia, it needs to be accompanied by the resources necessary to make the response to a missing person decisive and more likely to succeed. It will require planning and coordination between patrol and investigative units, with the need to codify these arrangements in standing procedures. In the case of the clinical trial being conducted by one of the authors here, knowledge about the link between mental health and behavior is critical for understanding why connections to care are preferable to arrest. For mental health crises where a person’s behavior can be unpredictable or aggressive, Crisis Intervention Team training and competence in the type of effective de-escalation found in the Police Executive Research Forum’s Integrating Communications, Assessment and Tactics curriculumReference Engel, Corsaro, Isaza and McManus ⁸ should be the minimum standard for a safe and compassionate response. It has been shown that officers who report self-efficacy when it comes to de-escalation and referrals to treatment are more likely to exercise these preferred options.Reference Compton, Krishan, Broussard, Bakeman, Fleischmann, Hankerson-Dyson and Husbands ⁹ It is critical, however, that policy, leadership, and oversight ensures they are exercised equitably in terms of race and other sociodemographic factors. Too often, improvements in access to care disproportionately accrue to more affluent, white communities.

Despite these needs, however, voluntary registries are a promising sign, because they acknowledge the need to take mental and behavioral health crises seriously as a distinct type of incident. They may hold promise for a more tailored, well-informed response, rather than the prevailing practice of collecting basic information through the 9-1-1 system and figuring out the rest upon arrival. In the case of people with dementia, the latter can result in wasted time, when time is truly of the essence. In the case of mental health crises, the result may not only be an unnecessary arrest, but an avoidable use of force. In both cases, the problem is a 9-1-1 information gap, one which voluntary registries may be poised to fill.