Legal issues pertaining to the collection of sociodemographic data in emergency departments

A recent issue of Academic Emergency Medicine contained the article “Equityrelevant sociodemographic variable collection in emergency medicine: A systematic review, qualitative evidence synthesis, and recommendations for practice” by Leeies et al.1 We believe additional ethical and legal considerations warranted exploration beyond the scope of the abovementioned systematic review and qualitative evidence synthesis. In this special contribution, we provide more detailed legal context surrounding our discussion on antidiscrimination, patient privacy, and consent, to provide emergency medicine and health information systems decision makers further knowledge on protecting the rights of patients.


INTRODUC TI ON
A recent issue of Academic Emergency Medicine contained the article "Equity-relevant sociodemographic variable collection in emergency medicine: A systematic review, qualitative evidence synthesis, and recommendations for practice" by Leeies et al. 1 We believe additional ethical and legal considerations warranted exploration beyond the scope of the above-mentioned systematic review and qualitative evidence synthesis. In this special contribution, we provide more detailed legal context surrounding our discussion on antidiscrimination, patient privacy, and consent, to provide emergency medicine and health information systems decision makers further knowledge on protecting the rights of patients.

DATA S OV E R E I G NT Y
Concepts, rules, and regulations regarding ownership and control of data occur at the individual level, ethnocultural population level (e.g., specific Indigenous populations), institutional level, national level, and international level. The information systems of institutions and governments are evolving in terms of diversity and inclusion to offer expanded definitions and categories of sociodemographic data. For example, in 2021 the Canadian Census was modified to include the collection of gender identity from transgender and nonbinary populations and to better reflect ethnocultural diversity. 2 Further, Canadian vital statistics legislations and corresponding personal health identification documents allow for an "X" designation in various jurisdictions, while other jurisdictions allow people to choose to not display their sex on their health card. Barriers to updating or modifying government documents may disproportionately affect gender-diverse people given the "intersection of gender diversity with various forms of social exclusion." 3 Without appropriate identification that accurately reflects the gender identity of the cardholder, gender-diverse persons are frequently outed, misidentified, and put in harmful situations when they present for health care. 4 At the forefront of our recommendations is a process that can offer patients agency and autonomy over the information they share, with the hope that eventually there can be continuity to these data across the patient's medical records (if consented to) to decrease the patient's need to repetitively disclose their pronouns, gender identity, and name throughout health care visits.
There is increased recognition globally of the benefits of data sovereignty, particularly for systemically oppressed populations, so that these groups can be empowered to govern their own data and work to dismantle longstanding structural inequities. 5 Indigenous levels of protection.
Legal barriers exist in the sharing of data, with scholars pointing to many uncertainties and inconsistencies around who "owns" health data. 15, 16 While there has been a push toward recognizing personal health information as property of the patient, this concept of data ownership has been largely debated including by health law scholars, despite detailed regulations existing in most developed countries. 17 In the past, courts have found that this personal health information does not meet the definition of personal property in law. 18 Some argue that personal data ownership should be recognized as a human right, with individuals having the power to sell, profit from, and access their data. However, others are wary that this individualized shift may have unintended consequences of increasing health care costs with negligible financial gain to individuals. 17 This debate surrounding data sovereignty has become increasingly complex given the technological advancements and start-ups within the global health data market.
Business plans are proposing the creation of mobile apps where people are given convenient access to their personal health information as well as an opportunity to sell their information to the private sector. 17

ANTID ISC RIM INA TION
While it was outside the scope of our systematic review and qualitative evidence synthesis to comprehensively analyze all potential legal implications of the jurisdictions represented by the citations included (Australia, Canada, and the United States), we were struck by quotations from publications in the United States where it was identified that a barrier to disclosure of demographic information for some patients was the lack of state law prohibiting discrimination based on gender identity or sexual orientation. 1 In the United States only 54% of LGBTQ persons live in states that have hate crime laws covering sexual orientation and gender identity representing a significant gap in legal protections for nearly half of LGBTQ persons in America. 19 The current antidiscrimination laws within the United States are Collecting sociodemographic data in EDs raises additional questions surrounding the privacy of this information given that the patient may not receive a direct benefit from sharing certain identity factors on a given ED visit. Given this, the collection of sociodemographic data should only occur after informed consent and an assurance that disclosure will not result in discriminatory treatment.
Secondary uses of patient health information for the purpose of research or quality improvement have varying rules and regulations depending on the jurisdiction. Depending on the sociodemographic factors collected, there may be additional considerations regarding who should be involved in deciding how these data are collected and used.
Privacy concerns were one of the key barriers to the collection of sociodemographic data in our systematic review as well as one of the most frequently endorsed potential harms that patients and staff were concerned about. 23 Fears of stigma and discrimination from health care providers who obtain these data are known patient concern. 24 For example, there are concerns with how collecting information relating to race, ethnicity, and language may be misused to identify undocumented immigrants. As a result, informed consent processes should include sufficient information for patients to understand how their data will or might be used. When it comes to concern over the information being collected staying private, there are many examples of unintended privacy breaches of confidential private health information. In 2018 there was a class action lawsuit against the University of Chicago and Google in the United States for allegedly sharing hundreds of thousands patient medical records without adequately removing identifying information. 27 In 2020, a privacy breach occurred when detailed personal health information of 8900 children receiving services from a public health program was emailed to approximately 100 service agencies in Canada. 28 In the United Kingdom, audits by the National Health Service has found hundreds of organizations in breach of data sharing agreements since 2015, with 33 organizations in breach in 2022 alone, including health care providers, universities, and pharmaceutical companies. 29 The proposal for the collection of additional sociodemographic data must be reconciled with the reality that breaches do take place, including situations where data are wrongly shared by health care workers to third parties and stolen or lost.

CON CLUS IONS
There are many ethical and legal considerations for how to implement the collection of sociodemographic data to best support health equity for patients. With decades of research showing the systemic discrimination within health care, institutions must find ways to adequately understand the issues at hand to make advancements on improving the quality of care to patients. 30,31 Intersections between medicine and law reveal overlap in the areas of patients' rights, promotion of health equity for marginalized groups, and protection from patient harm. Advocacy for ethical issues pertaining to the collection of sociodemographic data should therefore include interdisciplinary work between medicine and law. Emergency medicine decision makers must consider their ongoing obligations to protect patients from potential bias and discrimination through antioppression education and advocacy of antidiscrimination legislation. Our original publication provides recommendations on how to implement sociodemographic data collection, including the need for meaningful collaboration with marginalized groups within all phases of the project and its evaluation. 1 By improving sociodemographic data collection, EDs will be better able to protect patient privacy while they identify inequities through an intersectional lens, to measure gaps in care and design strategies to address systemic discrimination.

AUTH O R CO NTR I B UTI O N S
All authors participated in the conceptualization and writing of this special contribution.

CO N FLI C T O F I NTER E S T S TATEM ENT
The authors declare no conflicts of interest.