How equity and accessibility are central in building Unity Health Toronto’s new electronic patient record system

People belonging to groups experiencing marginalization, such as those who live with a disability, members of the 2SLGBTQ+ community and Black and Indigenous peoples, experience disproportionate health outcomes, such as higher rates of mortality, chronic illness and mental health issues.

On Nov. 30, Unity Health Toronto is launching a new electronic patient record (EPR) system that aims to improve the care experiences for patients across our three sites. Powered by Epic Systems, this new EPR system was built with specific considerations for equity, to support our efforts to address health disparities prevalent in our health care system.

Below, learn about three key features of the new system and decisions made throughout the build and implementation to better support patients belonging to groups experiencing marginalization.  

This story is part of a series on the launch of Unity Health’s new electronic patient record (EPR) system, powered by Epic Systems. These stories recognize the many people who made this project possible, and provide important information for Unity Health patients and caregivers as they plan to navigate the new system when it launches on November 30, 2024.

Accessibility

Harry Ennis, a patient and family partner at Unity Health, lives with a mobility disability. Over the years, he’s had several negative encounters with the health care system.

He recalls one experience when he was assigned to a small treatment room.

“I have limited range of motion in both knees, so the health care professionals had to climb over me to access the computer,” he says. “It didn’t feel great.”

To avoid situations like this, Unity Health’s new EPR system will allow patients—or a delegate—to add disabilities and accommodations into their chart.

Recognizing that no two disabilities are the same, the system contains open-text spaces rather than check boxes or drop-down menus, so that patients can write about their specific needs. Staff and physicians will have access to this information before appointments so they can plan accordingly. 

“If staff were aware of what accommodations I required, it would have helped immensely,” says Ennis.

This decision for open-text spaces was made following months of consultation with patients and partners like Ennis, who have lived experience with disability. Unity Health’s Office of Anti-Racism, Equity and Social Accountability and members of the organization’s Equity of Access Committee were also involved.

The new EPR system will be WCAG 2.1 AA-compliant, meaning it will meet internationally recognized standards to ensure digital content is accessible to users. A tip sheet that identifies resources and strategies to support various accommodations requests has been developed to support the implementation of this new field.

Additional training opportunities and resources will be made available for staff and physicians post-go-live to help them better understand disability and provide requested accommodations.

Sexual orientation and gender identity (SOGI)

Patients who are misnamed or misgendered tend to experience poorer health outcomes, including higher rates of mental health issues and suicidality. While there will be ongoing opportunities to improve the new EPR system once it goes live, the system should help address this, with new fields for gender identity, sex assigned at birth, sexual orientation, pronouns and chosen name, organ inventory/status, and gender affirming procedures.

This information will improve the care experience and patients’ health outcomes by ensuring appropriate delivery of care and accurate interpretation of results. These fields also encourage staff and clinicians to avoid assumptions based on patients’ appearances, gender expectations or legal documentation.

“Respect and dignity live within our hospitals and across our organization,” says Taylor Strande, speech language pathologist at St. Michael’s Hospital and member of the Equity in Care Workgroup. “We need that embedded in all of our practices, including how we understand patients’ chosen names, gender identity and pronouns.”

Like the accessibility and accommodations field, patients will be able to input their sexual orientation and gender identity (SOGI) information themselves, if they choose. Clinicians will also be provided with education and guidance on how to respectfully ask questions about SOGI, and collect and input that information on patients’ behalf.

This includes making sure that patients understand the implications of putting this information in their chart, says Strande, as some patients may not feel safe disclosing this information.

“If we can make a patient feel comfortable and affirmed by honouring their personhood through their chosen name and gender identity, then we’ve created a successful care experience,” says Strande.

Racial identity

It can be a helpful first step in care for clinicians to have patients’ accessibility and SOGI information; both pieces of information can support the provision of an affirming care experience with appropriate delivery of care. When it comes to race-based information though, the benefits to collecting this information in the electronic patient record may not outweigh the risks.

“While race-based data is a necessary tool, we also have to note that data that is not used, collected, or governed well has the ability to cause harm to individuals and to communities,” says Allison Needham, the Director of Anti-Racism, Equity and Social Accountability at Unity Health. “We saw these harms during the first wave of the COVID-19 pandemic, where data was used to support decision making and policy that further marginalized racialized communities and widened disparities. This is one of many examples.”

In terms of research, quality improvement, and population health, data about patients’ racial identity helps with understanding systemic inequities and can be used to support improvements and resource equitable interventions. But when it comes to day-to-day interactions with patients and care delivery, race-based data can lead to biases and harmful assumptions that can negatively impact a person’s care experience and outcomes.

“When collecting data in the electronic patient record, we need to weigh out the immediate benefits to patients alongside the risks,” says Needham. “If I’m a nurse and I’m seeing you in the emergency department, what is the immediate significance of me documenting your race in your electronic medical record? How will the care that I give you change based on your race?”

The new EPR does not allow for the access to race-based identity data to be controlled, which does not align with the data governance needed to ensure equitable analysis, reporting and use.

We also know that high quality race-based data collection requires consent with a full understanding of how it will be used to benefit the patient and others. Widespread implementation of this nature will take time, and poor data quality has the risk of leading to erroneous conclusions about individuals or a community.

Conversations about whether or not to collect race-based data in the electronic patient record have been happening for years at Unity Health. But with the risks being clear and the benefits being unclear, race-based data won’t be collected in the new EPR system – at least at this time.

However, if a patient feels that disclosing information about their racial identity will benefit their care, there will be spaces where their care provider can ensure its inclusion in the record.

For example, if an individual is Indigenous and would like to see an Indigenous care provider or would like to have a Smudging Ceremony, their clinician can support them in indicating that.

“There are going to be times when someone wants to share aspects of themselves because it is relevant to their care needs,” says Needham. “In that case, the person will be supported in doing so.”

Looking ahead

In reflecting on equity-related data collection in the upcoming EPR, Needham says that conversations, assessments and education will continue past the Nov. 30 launch. This is necessary to continue improving the system, thus continue improving care.

“With the digital world, there’s so much positive potential that can be realized,” she says. “But we know that it won’t all be perfect, so we need to be mindful about how we collect and use people’s data to ensure that it is, to the best of our ability, beneficial to them, to their care and to their experiences with us.”

And while this work is difficult, multi-faceted and ongoing, she adds, “Together, we’re building a system that protects and celebrates the identities of patients at Unity Health.”

By: Kaitlin Jingco