Hospitals are filled with sensitive information about what ails us, but a new series of questions being rolled out in parts of Toronto aims to drill deeper into personal lives, asking patients about their race, sexual orientation and how much money they make.
The large-scale demographic data collection appears to be a first in Canadian hospitals, calling on patients to reveal whether they were born in Canada and what language they prefer to speak. Whether they have a mental illness or abuse alcohol and drugs. Whether they’re heterosexual, gay or consider themselves “two-spirit.” Whether they make less than $30,000 or more than $150,000, or somewhere in-between.
Proponents of the voluntary survey say it’s designed to help health-care planners address inequities and language barriers and improve disease-prevention programs in one of the country’s most diverse and densely populated health regions. It’s also meant to fill an information vacuum created by the federal government’s elimination of the long-form census, said Camille Orridge, chief executive of the Toronto Central Local Health Integration Network.
But as the information-gathering project expands, some patients and physicians are raising concerns, questioning whether the survey is too invasive.
The data will help “ensure we’re planning for all populations,” Ms. Orridge said. “Capturing data at the start of the patients’ journey will … help us plan for the patients’ needs.”
George Vincent, an orthopedic surgeon at St. Joseph’s Health Centre, doesn’t think it’s appropriate to ask patients such personal demographic questions while they’re waiting for hospital treatment. He worries patients will feel obligated to answer. Or they might think their doctor ordered the survey and their responses could somehow negatively affect their care.
“That’s not the forum to be asking people about their sexual persuasion and the amount of money they have in the bank,” said Dr. Vincent, who suggests the questionnaire be mailed to patients instead. “They’re focusing on a vulnerable part of someone’s care, which I think is totally inappropriate.”
The provincially funded Toronto Central health region last year directed its 17 hospitals to begin asking eight demographic questions that stemmed from a pilot study involving two hospitals, Toronto Public Health and the Centre for Addiction and Mental Health. That project is now being expanded.
At St. Joseph’s, demographic data have been collected at presurgery registration since last October. Starting Tuesday, the questionnaire will be given to more patients – in the ambulatory care centre and at the fracture and eye clinics.
The expansion is at the request of Toronto Central, which asked St. Joseph’s and its other hospitals, including Mount Sinai, Sunnybrook and St. Michael’s, to broaden their survey efforts to capture 60 per cent of patients by the end of March, 2015. The data program was reviewed by health ethicists.
Other health regions are studying Toronto Central’s experience. Collecting socio-demographic data in hospitals occurs in the United States and United Kingdom, but it’s relatively new in Canada. Toronto Central began examining the idea in 2009.
Marylin Kanee, director of human rights and health equity at Mount Sinai, said properly training staff is key to ensuring patients feel comfortable with the survey and understand the information will be used to improve medical care. Researchers will not be given names of patients. Responses will be aggregated and analyzed to detect differences in health outcomes connected to variables such as race, language and poverty.
“This is information that will help us to tailor the care that we provide to our patients,” Ms. Kanee said. “It will give us information about who are patients are and it will help us to really understand where the inequities are.”
At St. Michael’s Hospital, Fok-Han Leung has experienced the benefits of having greater demographic information at his fingertips. Data collection was tested at the hospital’s family medicine outpatient clinic, with responses gathered on tablets. The information was then instantly linked to a patient’s file.
Seeing a patient’s income, for example, helped inform Dr. Leung’s prescription decisions. In some cases, a shorter medication supply and monitoring the drug’s effectiveness was more prudent than a costly 90-day prescription.
“It can sometimes help with diagnosis, but it very much helps with [care] management,” Dr. Leung said.
Patient participation in Toronto Central’s questionnaire has been strong so far: 85 per cent. At St. Joseph’s, Mike Heenan, vice-president responsible for quality and patient experience, said he’s heard from a few staff opposed to the hospital participating in the project. But he notes 95 per cent of 14,954 presurgery patients have answered the questionnaire, while only eight have registered concerns.
“We have not had anything that has caused us concern or has made us think we might want to pause this project,” Mr. Heenan said.
One of Dr. Vincent’s patients has expressed displeasure. Sergio Pinho filled out the questionnaire on behalf of his mother, who speaks Portuguese and was having knee surgery at St. Joseph’s in April. His mother was uncomfortable with the personal questions. But when Mr. Pinho queried the hospital clerk, he said he was told to fill out the form. He left a voicemail of complaint with the hospital, but said he never heard back.
“I felt obligated to answer every question,” Mr. Pinho recalled. “I felt that she wasn’t going to be attended [to] if she didn’t answer the questions.”
In an e-mail, Mr. Heenan said Monday he was sorry to hear that Mr. Pinho and his mother had this experience and invited Mr. Pinho to contact the hospital again. “This is not a reflection of the processes we have in place nor the other feedback we’ve received,” Mr. Heenan wrote.Report Typo/Error