Open Letter
Ontario: Immediately halt COVID-19 health data sharing with police!
To:
Hon. Doug Ford, Premier
Hon. Christine Elliott, Deputy Premier and Minister of Health
Hon. Sylvia Jones, Solicitor General
Rick Leary, CEO, Toronto Transit Commission (TTC)
Custodians of healthcare data in Ontario
IT workers in healthcare spaces in Ontario
This is an open letter to demand an end to the sharing of Personal Health Information—including COVID-19 status and all socio-demographic information related to COVID-19 status—with law enforcement across Ontario immediately.
Under the “Emergency Management and Civil Protection Act”, police now have exceptional, unregulated powers to access personal health information. This includes COVID-19 status, address, name, and date of birth.
This letter represents the concerns of healthcare providers, community members, healthcare researchers, community organizations, communities excessively targeted for criminalization, and healthcare organizations across Ontario who are opposed to inappropriate use of police power and privacy violations by law enforcement. These privacy violations erode constitutional rights, damage communities’ trust in public institutions, and undermine access to health services in this time of COVID-19.
We demand that the public be informed of how this data will be used, offered the option of confidential COVID-19 testing in community health settings, and that each person accessing healthcare is given the opportunity to give fully informed consent regarding this data collection in healthcare settings. The public is owed a data collection and usage plan that has a prescribed scope and clear rationale for data collection. Further, detailed information must be provided to the public verbally and, in writing, including on an accessible website, regarding the storage, use, protection, and disposal of such data.
Slowing down COVID-19 in Ontario requires widespread trust in the interventions being implemented to contain the pandemic. Communities across Ontario continue to express a lack of trust in police forces due to demonstrated lack of accountability. Police forces have demonstrated that they are not trustworthy custodians of private health data. Structural and systemic inequities have led to excessive criminalization of key communities including Indigenous and Black, 2S & LGBTQ* communities, people experiencing homelessness, people who use drugs, people living HIV, people with disabilities, and people living with mental illnesses. The communities that are disproportionately affected by COVID-19 and are the same communities disproportionately targeted by increased policing and surveillance. Ontario cannot afford to further lose public trust in pandemic responses during this critical moment.
Calls to Action
We make the following calls to action, to the Ontario government, healthcare providers, first responders, public health staff, health researchers, data and computational scientists, IT staff, and IT developers, who have the opportunity to undertake without delay measures to ensure necessary protections of community health, rights, and privacy during this pandemic.
Calls to the Ministry of Health and Long-Term Care, Premier Doug Ford, Minister of Health Christine Elliot, and Solicitor General Sylvia Jones
1. The province must immediately revoke the order enabling police to access sensitive health information. COVID-19 is a health crisis: the healthcare system and health agencies are best situated to lead its mitigation and containment. The province must provide a detailed and transparent report on how data released to date has been used and by whom. Public trust is critical for engagement with prevention and testing measures and sustaining a long-term response. This breach of trust must be repaired by acting in a timely manner.
2. The government of Ontario must include a sunset clause in any regulation or order for all COVID-19 and any other related data collection sparked by the pandemic that is shared outside of healthcare agencies. Such a clause must also publicly release all information about data acquisition, storage, data ownership, and purge of said data in the interests of transparency and mediating harm. All data purges must be independently verified by a qualified third-party to ensure completeness due to the nature of data ecosystems.
3. Repeal Regulation 120/20 of the “Emergency Management and Civil Protection Act” and immediately issue the appropriate directives and orders to all police services requiring them to cease and desist accessing personal health information about anyone in Ontario.
Calls to action to the Toronto Transit Commission (TTC)
4. In April 2020, the Toronto Transit Commission (TTC) may have violated the Ontario Human Rights Code, which prohibits discrimination in the provision of services. The Toronto Transit Commission (TTC) must immediately disclose how they accessed the COVID-19 status of the Black woman they denied service to on April 14th and the process that resulted in the broadcast of her COVID-19 status and physical description. Further, the TTC must also disclose whether they have access to any other person’s COVID-19 status, where they are housing this information and a detailed description of the steps to purge the information, verified by a qualified independent third-party to ascertain completeness due to the multi-layered nature of data ecosystems.
The TTC must issue a public apology with regards to the broadcast of the information as noted above.
Calls to Public Health staff, and health providers
5. We call on custodians of private healthcare data to ensure the human rights of people in Ontario are protected. Please protect your patients from stigma and criminalization by refusing to share any personal health information with law enforcement. Uphold your responsibility and retain peoples’ private data within the healthcare system. This pandemic stands to be exacerbated by policing, criminal charges, and a pervasive surveillance culture. Sharing this data will alienate patients, decrease already damaged public trust in public institutions, and undermine engagement in testing and access to health care, deepening conditions of isolation that put isolated people at greater risk.
Call to IT workers, designers, programmers, and coders working in the public health spaces
6. We invite the builders of information technology infrastructure to ensure the protection of human rights in your work. In the tradition of #TechWontBuildIt, please protect the interests of patients by refusing to build the infrastructure for data sharing with police forces across Ontario. Do not be complicit in privacy violations and the rise of invasive surveillance culture. This is not normal. Organize with your colleagues to refuse the construction of software, databases, or platforms that assist police forces in criminalizing people.
Organizational Signatories:
Healthcare Providers Against Poverty
Toronto Overdose Prevention Society
Coalition Against More Surveillance, Ottawa
Parkdale Community Legal Services, Toronto
Toronto Harm Reduction Alliance
No One is Illegal, Toronto
People's Health Movement Canada
Ontario Coalition Against Poverty
The AIDS Committee of Cambridge, Kitchener-Waterloo & Area
Carceral Studies Research Collective
Criminalization and Punishment Education Project
Journal of Prisoners on Prisons
Parkdale Queen West Community Health Centre
Black Medical Students’ Association at University of Toronto
Jail Accountability and Information Line
Black Lives Matter Toronto
South Riverdale Community Health Centre
Breakaway Addictions Services
Dissociative Society of Canada
OCASI - Ontario Council of Agencies Serving Immigrants
Fred Victor
Health Network for Uninsured Clients
Women and HIV/AIDS Initiative Ontario
AIDS Committee of Toronto (ACT)
AIDS ACTION NOW!
Overdose Prevention Ottawa
Women's Wellness Within
OHIP for All
AIDS Committee of Windsor
CUPE 3903 Executive Committee
Action Positive VIH-Sida
HIV/AIDS Regional Services (HARS)
AIDS Committee of North Bay and Area
Planned Parenthood Toronto
Ontario Aboriginal HIV/AIDS Strategy
Denise Williams, Health Educator
Laura Walton
Yimeng Wang
Jack Comerford
Mary Aliazon
Parkdale Queen West Comunity Health Centre
Atia Haq, Registered Psychotherapist
HIV/AIDS Regional Services (HARS)
Action positive VIH-Sida
Khalud Adam
Cupe 3903 Executive Committee
Kathryn Nelder
Beryl Pilkington
AIDS Committee of Windsor
Jamie-Lynn Sluman
Maddy Lynch
Emily Nixon
Olga Bondar
Troy Taylor
Natalie Illanes Nogueira
Afi Browne
CAYR COMMUNITY CONNECTIONS
Noah Adams
Sahana Puvirajasingam
Jillian McClelland
YC Lee
Queer Ontario
Jann Houston
Jen Quinlan
Flemingdon Health Centre
Background
As health providers, community organizations, civil liberties groups, and individual community members, we have good reason to feel alarmed about this infringement of health privacy rights.
The Information and Privacy Commissioner of Ontario (IPCO) has recognized the unique context created by this pandemic. The IPCO recognizes that Public health units and government organizations should provide as much information as is necessary to protect people’s health, however, the IPCO advises that this must be done without naming individuals and through providing non-identifying information. The release of identifying information to police takes sensitive health information out of the healthcare system and puts it in the hands of agencies that do not have a social service function, but possess primarily punitive powers.
This breach of privacy by the Ontario government has already been highlighted as a human rights issue. In Europe a new protocol exists related to ensuring health data will not be shared with police. However, news reports, public documents produced by provincial and regional authorities, and knowledge by on-the-ground service workers (including signatories to this letter) has made it clear that the Ontario government has taken “extraordinary steps” to give police forces lists of all COVID-19 patients in the province. Police forces in Waterloo and Kingston publicized that they are accessing this data; we do not know if and how this information is being accessed or used by police in other jurisdictions.
Further, on April 14th in Toronto, a Black woman’s positive COVID-19 status was shared across all channels of the TTC, instructing that service be denied to this person. The City of Toronto has released a “non-compliance” protocol for people in the shelter system related to testing, isolation, and recovery. “Escalation Step #2” indicates shelter staff “may” use Toronto Police Services to “assist” with clients who are non-compliant, raising further troubling questions where police involvement in health matters is concerned. The increased reliance on policing and the reduction of rights to privacy in the context of COVID-19 is of extreme concern. A crisis is not grounds for violating a long-held standard; rather, a crisis is the exact time to ground all of our responses in rights, to help strengthen, not divide our communities. Ontario needs solutions grounded in population health, not policing and criminalization.
Implications
Across Ontario, we have already seen clear evidence that police should not have access to sensitive health information; these experiences are echoed across other Canadian jurisdictions.
Previous instances of data sharing between health providers and police have created evident harms as experienced by individuals, and exacerbated structural barriers faced by those individuals in accessing health care.
Uncertainty regarding the collection and use of personal health information leads to reluctance and avoidance of health services. This is amply demonstrated by research, and confirmed by the testimony of health providers and experiences of affected communities. This is especially true of health services providing care to non-status and undocumented people, sex workers, people living with HIV, people who who use drugs or who are drug trade-involved, people experiencing homelessness, and racialized and Indigenous communities in particular. Alarmingly, based on the recent experiences of the health providers who are among the signatories of this letter, this has led to:
1. Reluctance to access testing for COVID-19, for fear that a positive result will lead to police surveillance, enforcement of compliance, or sanctions for failure (or inability) to self-isolate.
2. A reluctance to seek health services more generally, particularly in hospital settings, due to fears that once in care and tested for COVID, positive results will trigger law enforcement awareness and involvement.
This echoes the lessons learned through law enforcement involvement in the HIV response and similar breaches of health privacy rights (for example, subpoenas of health records for criminal proceedings) directly contributing to a reluctance to access testing among communities most at risk. Further, we are already observing that many among the communities we serve as health providers are being criminalized for an inability to practice physical distancing and other public health orders. Thus, calling into question the involvement of law enforcement in enforcing behaviour that stems from structural conditions and vulnerability.
Police are not equipped, trained, or competent in mediating threats to community health. The experiences of communities affected by the overdose crisis and people living with HIV have taught us that policing pandemics is not only ineffective but that police presence has been the cause of undue harm, fatal injury, and the preventable death of people experiencing health crises that may have otherwise been unharmed.
Further, COVID-19 health data is not actionable, in that it obscures the actual scale of COVID-19 prevalence in the community, does not differentiate between past or current infection, and threatens to create a false sense of security by giving the impression that those not in the police database are COVID negative.
Recent changes to Ontario’s health privacy laws strengthen certain protections for the health privacy of Ontarians, as noted by the Information and Privacy Commissioner of Ontario, and should be applauded. However, the exceptional powers granted to police to access sensitive and identifying health information under the EMCPA undermines the spirit and direction of these positive recent changes.
Police violence as a threat to individual and public health
Increased policing drives people away from health services and increases stigmatization and dislocation from care. COVID-19 is an unprecedented crisis that is excessively affecting already marginalized communities that the police have a deleterious relationship with. The courts have repeatedly found pervasive and excessive misuse and abuse of power.
There have been numerous incidents of police in Ontario and other jurisdictions releasing identifying information and health status of individuals alleged to have committed a crime, including of an HIV-positive sex worker, despite the fact that she was not convicted, and legally innocent.
Police have been convicted for rape of civilians, corruption, and appropriating products from drug busts for personal use and consumption. More importantly, police forces have demonstrated that they are not worthy of our trust because of poor institutional judgement and inability to correct and appropriately punish serious indiscretions.
In February 2020, Toronto Police Services admitted to using controversial facial recognition technology, Clearview AI, after lying about its use in January. Waterloo police have admitted to using this controversial technology that has been banned in several US cities. The Ontario Human Rights Commission (OHRC) has many documented complaints about police violence, harassment, and intimidation towards members of the public. Further, a 2017 report by the OHRC outlines with disturbing detail the frequent racial profiling and discrimination perpetrated by the Toronto Police Services. This April, during the pandemic Brampton police provided yet another damning example of their inability to function in a health crisis when they murdered 26-year old D’Andre Campbell at his own home, in front of his family, after he called them for assistance during a mental health crisis. D’Andre Campbell called assistance but was met with tasers and bullets. This is only one of many such fatal outcomes police frequently mete out to Black people. Also in April of this year, Toronto Police Services ran over a 28-year old man with a cruiser, resulting in serious injuries.
Police forces do not have a mandate to bolster health or provide healthcare to Ontarians. For this reason, in addition to the short, non-exhaustive list of recent well-documented breaches in public trust outlined above, we demand that police forces across Ontario are no longer be given access to personal health information of any Ontarian, and that whatever information they currently possess is purged from their records, databases and provide verification from an independent third-party to ascertain completeness due to the multi-layered nature of data ecosystems.