Distraction Free Reading

Co-signature Event Context: Toward a Participatory Electronic Health Record

Stacks of books, charts, and paper records.

Stacks of paper records. Photo credit: Wesley Tingey, Unsplash

The days of doctors scratching illegible notes in charts fated to hide in obscure files never read by another soul is long gone. Over the last two decades, paper charts have nearly disappeared as the evolution of the electronic health record (EHR) has come to dominate the healthcare environment not only in the US, but globally. The health record performs multiple types of labor. It serves to facilitate communication in medical care or research; it is a legal document and a record to justify billing. A new diagnosis and billing code must make its first entry into the medical record accompanied by the signature of a clinician authorized to determine this diagnosis. After this initial entry, non-professional personnel may then use this diagnosis for any of the above purposes (communication, billing, legal). This blog post explores how developments like the patient portal of the EHR create new opportunities for interpretation, use, and contestation by the patient themselves, and how marginalized communities might be excluded from these new possibilities.

New forms of Patient Involvement in Electronic Health Records (EHR)

On April 5, 2021, in the US, the 21st Century Cures Act took effect. The Act was originally signed in December 2016 by US President Barak Obama as a broad funding initiative aimed at jumpstarting innovation in biomedical practice and research. It was intended to ensure greater access for patients to their own EMR. Prior to the Act, patient access could be limited only to very basic information such as medication lists and select test results. The new changes are meant to open almost the entire record to the patient, with very limited exceptions which must include a specific, legally binding designation as content capable of inflicting severe harm. These legal changes to the EHR allow for patients to suggest changes to some aspects of their record, affording, for the first time, some limited opportunity for co-authorship of the medical record. Unfortunately, access to health information technology (HIT) like the EHR and patient portal mirrors other forms of social capital and privilege, where structural racism and economic inequality limit or foreclose opportunities for these new modes of EHR participation. In this piece, I draw on Derrida’s theorization of the signature (1977) to consider how new forms of authorship may be engendered by this change to rules about the EHR in the US. I draw on my recent research into a rapidly developed large scale temporary housing program during the COVID-19 pandemic in San Francisco. The program was designed for medically vulnerable people experiencing homelessness (PEH) in which the EHR performed the labor of housing triage. Drawing on Derrida’s notion of “iterability” and “différance,” I suggest that new modes of patient participation in the EHR afford a re-imagination of medical authority and the clinician signature, opening spaces for patient contestation and refinement of their own record. I suggest that for marginalized groups such as PEH, this possibility is simultaneously more urgent and yet, generally foreclosed under current EHR designs. I argue for a re-imagination of participatory EHR design in which every encounter affords an opportunity for co-authorship of the record. Using design justice principles to mitigate the HIT limitations and roadblocks faced by the most marginalized and vulnerable communities, such as PEH, advances an emerging demand for a critical health information technology (Mustafa, 2021).

EHR Performing Housing Triage for People Experiencing Homelessness

Person wearing green scrubs, surgical mask, protective eyewear and hair cover with gloves moving a computer mouse.

Medical professional utilizing electronic medical records.
Photo credit: Irwan Iwe, Unsplash.

San Francisco is a city of dueling identities. It is simultaneously recognized as a tech epicenter, as well as a progressive, queer mecca. It is a city where startups are born and die in quick succession, boasting promissory futures and billionaire dreams. (The public hospital is named Zuckerberg San Francisco General Hospital.) Astronomical housing costs, together with a mild climate and relatively generous (by US standards) social services result in a large and growing community of PEH both through displacement and economic migration. Structural racism means this population is disproportionately comprised of communities of color, especially Black persons. In short, San Francisco is a city of extremes, where the Twitter headquarters overlooks tent encampments and turns a blind eye to the daily death toll faced by its unsheltered neighbors from overdose, violence, and exposure.

In the early months of the COVID-19 pandemic, San Francisco was a model city for low COVID transmission and its early decision to enact a “shelter in place” ordinance. In April 2020, an outbreak in the city’s largest homeless shelter provoked panic among local leaders and PEH advocates, leading to the creation of what became known as the Shelter in Place Hotel Program, where 7,000 rooms were leased for a population which hovers around 9,000. As teams of outreach workers roved the city early in the pandemic looking for unsheltered persons with COVID-19 symptoms, they would be screened for eligibility for the SIP hotel rooms. Self-testimony or clinical diagnosis in the moment were not acceptable forms of validation for these rooms. Instead, rooms were granted or withheld according to the available documentation of the EHR. The condition of housing was offered on confirmation of specific diagnoses and ICD10 diagnostic codes, authored by a healthcare provider at some point in years recent enough for it to be a digital record. The EHR adjudicated the validity of the requisite form of risk for which the hotel intervention could be offered.

EHR: Signature, Iterability

In the US, diagnoses enter the chart via ICD10 diagnostic codes entered into the health record by a professional at the time of a healthcare visit, validated by their signature. The signing of the chart is an essential component of proper documentation, asserting the involvement of the professional who will have medico-legal liability for the written content they have signed. Changes from the Cures Act to the EHR create new spaces for patient participation, offering an opportunity to contest the stability of this signature. In “Signature, Event Complex,” Derrida’s response to John Searle regarding their debate about J.L. Austin’s How to do Things With Words, he notes the paradox of the signature itself.

By definition, a written signature implies the actual or empirical non-presence of the signer. But, it will be claimed, the signature also marks and retains his having been present in a past now or present which will remain a future now or present…what must be retained is the absolute singularity of a signature-event and a signature form (Derrida, 1977: 191).

Here, Derrida suggests that the question of the singularity of the signature-event is, in fact, undone by the very possibility of its existence. That is, the fact of the signature event denotes the non-presence of the signer.

The authoritative function of the signature is undone for Derrida by its iterability, its ability to continue forms of circulation. For Derrida, iterability is a function of its readability. He insists that for writing to communicate and transmit meaning, it must be readable despite the absence or both reader and writer. To write is to produce a mark which persists, is “transmissible, decipherable,” and yet contains within it the possibility of movement, of différance.

The Cures Act affords a space where select, privileged patients may comment or even object to the content in their own records and may begin to demand greater editorial authority to their records. This possibility (still largely unrealized) for participation, for co-authorship of the EHR, affords another way of thinking about how signature functions in EHRs and what it means to “sign a note.” The mark of the signature (now in digital form) historically affixes the authority of the doctor to the judgment/verdict inscribed in the medical chart. How might these new opportunities for patient participation alter the relationship between the author and the text? According to Derrida’s terms, the EHR is eminently iterable. It is read and interpreted in varying ways by medical personnel in the presence and absence of the patient and the clinician, evidencing the différance ascribed by Derrida. It is manipulated by the billing entity (hospital or clinic) and by the payor (private or government insurance). The EHR may be marshaled as evidence for a disability case or lawsuit.

The extent to which PEH are marginalized, silenced, or spoken for, often due to serious mental illness or substance use, gives the EHR an outsized role as a conduit to basic resources. Multiple types of studies have demonstrated the fragmentation of medical care for PEH, when basic survival means the daily negotiation of multiple situations of risk. As both a street medicine clinician and a researcher working with PEH in San Francisco, I have many years of experience working with the EHR of PEH and witnessing how the sporadic, rushed, and impersonal documentation of emergency departments makes up the bulk of their often scanty records. Perhaps ironically, one of the earliest EHR systems was specifically designed for PEH by the Boston Health Care for the Homeless Program in 1994 by engineers at Massachusetts General Hospital’s Laboratory of Computer Science. Before such systems were widely available, this one allowed multiple providers caring for the homeless to access a single patient’s record. This history gestures toward an initial effort at health equity and health justice in the design of EHR with specific considerations of the unique needs of PEH. Yet, as currently designed, the EHR can, instead, exacerbate the forms of paternalism, exploitation, and neglect already disproportionately experienced by the PEH in traditional medical systems.

Health records perform significant labor. The words documented in a patient’s chart generate the justification for treatments offered or withheld. They direct the course of major, life-altering procedures and decisions. In my study, I observed the forms of triage at work in distributing a highly coveted resource of tourist hotel rooms for PEH. Here, the clinician signature in the EHR effectively performed triage. The presence of the digital signature of any medical provider who entered one of several rotating diagnostic codes specified by the CDC as potentially high-risk for COVID-19 complications into the EHR effected triage. The presence meant a private hotel room with three meals a day and medical services on site for the duration of the pandemic. The absence meant continued suffering living on the street during a pandemic.

Toward Co-authorship of the EHR

Anthropologists have examined the role of electronic medical records and HIT, highlighting both the ways in which patients themselves are made to disappear, and how the ritualized corporate speech required by forms of HIT might be recognized as a form of witchcraft. The construction of the EHR around sterile diagnostic categories generated and authorized by the signature of a clinician give outsized power and discretion to medical providers who, in most cases, know very little about the illness experience of PEH who often receive very little routine, preventative care outside of emergency departments. A PEH-centered approach could take advantage of the new and more open forms of documentation enabled by the Cures Act by seeing each healthcare encounter as an opportunity to invite the participation of the patient in co-authorship, perhaps especially in emergency departments, to generate more robust records capable of facilitating more equitable and just health outcomes. Increasing but still inadequate investment in aspects of accessibility and attention to forms of exclusion are creating opportunities to redress the limitations of HIT in its current forms. Anthropologists can contribute to the growing field of design justice, including HIT design, helping mitigate the disempowerment and erasures inhered in our current EHR systems.

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