HHS's new $175M hospital information system raises concerns over lack of demographic data

Hamilton Health Sciences (HHS) is set to launch a new $175 million hospital information system on Saturday, but people who were part of a hospital committee on equity, diversity and inclusion say the system is missing key data.

Calls for data on race, disability, gender, sexual orientation, language to be part of new HHS system

Hamilton Health Sciences (HHS) launches a new $175 million hospital information system called EPIC on Saturday, but people who were part of a hospital committee on equity, diversity and inclusion say the system is missing key racial and socioeconomic data. (Bobby Hristova/CBC)

Hamilton Health Sciences (HHS) is set to launch a new $175 million hospital information system on Saturday, but people who were part of a hospital equity, diversity and inclusion committee say the system is missing key data.

The new system is called Epic. It's supposed to improve how HHS collects, stores and manages clinical information while also improving patient safety. It's the largest investment HHS has ever implemented into its information technology infrastructure.

"Healthcare providers will have a single, interwoven picture of the patient's medical record, including medications, problems, allergies, lab results, imaging, previous visits, and medical history," says the HHS website.

It will also have a data bank with over 60 million anonymized patients that will help health-care professionals search for patterns in the patient data.

But Lyndon George, executive director of the Hamilton Anti-Racism Resource Centre (HARRC), says HHS has yet to incorporate race-based and socioeconomic data in Epic.

He said he was part of HHS' President's EDI (equity, diversity and inclusion) committee and despite numerous people on the committee calling for the inclusion of this data, HHS only says it will include the data in the future.

Lyndon George is the executive director of the Hamilton Anti-Racism Resource Centre. (Bobby Hristova/CBC)

"We want to see race, ethnicity, disability, gender, sexual orientation, language, their time in Canada … these are the kinds of demographic information that would help us understand who is receiving care and who is receiving what kind of care," he told CBC Hamilton on Monday.

"We just kept hearing, 'We'll get to that later?' and we said, 'Why are we waiting?'"

George sent a letter to HHS president and CEO Rob MacIsaac on Monday urging the hospital network to take action.

The inclusion of the demographic data is important.

Figures from Hamilton public health showed people of colour made up 51 per cent of COVID-19 cases despite only accounting for about 19 per cent of the city's total population.

Hamilton's Social Planning and Research Council also had data that shows the city's poorest residents and people of colour had higher rates of COVID-19 than other demographics.

It will be months before HHS collects demographic data

Hamilton Health Sciences declined an interview request about the concerns but said in a statement "collecting race-based data is a priority."

"Resources have been set aside to support the necessary engagement, planning, and training that is required to collect, use and manage this information safely," read the emailed statement.

"We're committed to making this happen in the months following the go-live of our new hospital information system on June 4."

Rob MacIsaac is the president and CEO of Hamilton Health Sciences. (Samantha Craggs/CBC)

On Wednesday, HHS posted an online response from Dave McCaig, executive vice president of corporate affairs, about the concerns.

He said while people will be able to voluntarily add race-and gender-based information in to their electronic medical record starting Saturday, it'll be months before HHS starts collecting it.

"The size and complexity of this project has forced us to make difficult decisions about how much we can do at once. Going live with this system is a process that will extend beyond June 4," McCaig said.

"Our first priority is to ensure everything is functioning as designed."

Members of diversity group reportedly left with concerns

Ameil Joseph, a McMaster University associate professor who studies critical race theory, said he, like George, was part of the President's EDI committee.

Joseph said he and others left the committee.

"I think people were leaving because they felt the task force was there to have a diverse representation of community members and employees ... to provide advice to the president ... and then HHS often decided to do its own thing rater than rely on that feedback," Joseph said.

He said despite Epic sounding like it's more than capable of including this data during the launch on Saturday, it won't be included because HHS didn't do the work earlier.

"I feel disappointed but it's not a new kind of disappointment."

Cole Gately, founding Chair of Hamilton's Trans Health Coalition, said more must be done to address concerns.

"Trans, non-binary, and gender diverse community members are frequently deadnamed (a term for having your incorrect name used) and misgendered in healthcare interactions. Use of correct names and pronouns is an essential component of safe and equitable healthcare," he said in a media release from HARRC.

"We strongly encourage HHS to utilize the available features in their new EHR (electronic health records) to create the systemic level change required to address this ongoing issue."

HARRC offered five recommendations for HHS including meaningful community engagement about how to collect and use the data.

George said he wants to be optimistic about the situation.


Bobby Hristova is a journalist with CBC Hamilton. He reports on all issues, but has a knack for stories that hold people accountable, stories that focus on social issues and investigative journalism. He previously worked for the National Post and CityNews in Toronto. You can contact him at bobby.hristova@cbc.ca.