By Robert Cribb, Max Binks Collier, Declan Keogh and Naama Weingarten
About seven months after undergoing a surgery that left her in unbearable, life altering pain, Vinesha Ramasamy filled out a survey from the hospital asking for feedback on her care.
She had gone to the downtown Toronto hospital in July 2021 for a biopsy that would allow doctors to determine whether the suspicious growth on her lung was a return of the cancer that had nearly killed her.
But something went wrong. When she woke up, every breath was excruciating. It took a year for her to receive the rehabilitative treatment she needed. By then, she had developed an incurable, degenerative condition that makes even light touches painful.
“All of my previous life that I’ve had, it’s all died,” says Ramasamy, now 37.
Ramasamy was no longer able to work and was largely confined to her bedroom. As she answered the survey, she hoped her experience would help the hospital that had hurt her.
After a biopsy procedure went wrong, Vinesha Ramasamy was left in unbearable, life-altering pain. Photo credit: Steve Russell / Toronto Star
Ontario hospitals ask patients to fill out surveys as part of a legislatively mandated system that is supposed to identify problems, spur solutions and help hospitals hold themselves accountable.
But patient voices are often ignored, a Toronto Star and Investigative Journalism Bureau (IJB) investigation shows.
“It’s very hard, I think, for our stories … to really get noticed,” Ramasamy says.
Ontario’s hospitals are in a state of crisis. Earlier this week, the provincial auditor general released a scathing report that found staff shortages, spiking wait times for care and policy gaps are contributing to “delayed or missed diagnoses” in Ontario’s emergency departments — and leaving patients in “worse health.”
Amid growing concerns about the condition of our hospitals, the Star and IJB waged a lengthy freedom-of-information battle to obtain up to six years’ worth of survey data from more than 50 hospitals and health networks.
Ontario hospitals have fiercely guarded the results of these surveys, and patient comments have never before been made public, even though studies indicate that quality public reporting of hospital performance can improve the care that patients receive.
“Life is easier for government and hospital leaders if they don’t make it public, even though the public itself would benefit from that,” says Ross Baker, a leading Canadian scholar of patient safety who once helped lead the program that started collecting these surveys.
Some Ontario hospitals consistently scored poorly
At least 21 hospitals had in-patient units or emergency departments that consistently scored poorly on patient experience, raising questions about whether they worked to address problems identified by patients or even had the resources to do so.
Meanwhile, at least seven hospitals failed to retain all the comments that patients had written when filling out the surveys. Two of those hospitals — Humber River Hospital and Brockville General Hospital — said staff did not typically use patient comment data.
How did hospitals score?
Reporters obtained patient-survey data from more than 50 hospitals and health networks. Click here to search our database of some of the results from three key questions.
“Why would you not want to know what patients and their families are saying about your care?” asks Craig Thompson, Ontario’s Patient Ombudsman. “People — patients, caregivers — gave their time to give that insight. You hope it would get used.”
The Ontario Hospital Association (OHA) says the surveys are important for improving the quality of care.
Paid for with the public purse at a cost the OHA repeatedly refused to disclose, the surveys were administered by the U.S. research firm NRC Health. The publicly traded company’s annual reports show total Canadian revenues of more than $68.5 million U.S. between 2008 and 2022.
The OHA, which held the contract with NRC Health on behalf of hospitals, said the cost of the program in Ontario is unavailable because the information has been archived. It would say only that the cost was “significant,” but “an incredibly important investment.”
Surveys reveal haunting patient testimonials
NRC Health gathered data from about two thirds of Ontario hospitals between 2003 and 2022. The data obtained by reporters includes about 120,000 comments from patients and their loved ones.
There are first-hand testimonies from patients and their families alleging injuries, and even deaths, due to premature discharges, misdiagnoses, delays in care, and neglect, among other issues.
Ontario hospitals ask patients to fill out surveys as part of a legislatively mandated system that is supposed to identify problems, spur solutions and help hospitals hold themselves accountable. Photo credit: Investigative Journalism Bureau
Some complain of waiting for hours, and even days, in their own urine, feces, blood and vomit. Others say their hospital care caused lasting psychological trauma.
Others allege surgical tools or other items were accidentally left inside their bodies, an error that happens in Ontario at more than twice the average of 12 countries in the Organisation for Economic Co-operation and Development (OECD), according to a 2019 analysis.
“A sponge was left inside me,” wrote one patient following a C-section who had to undergo a second surgery to have it removed. Staff were “communicating … around me in whispered voices” and then avoided her “like the plague … it felt all very hush-hush and then swept under the rug.”
The patients surveyed make up a small percentage of the total number of patients that visit Ontario’s hospitals each year, and the IJB and Toronto Star cannot independently verify the allegations in the patient comments. But they provide valuable insight into patient perspectives and experiences used by leaders of Ontario hospitals, where some degree of “potentially preventable harm” is now occurring in more than six per cent of hospitalizations, according to data obtained from the Canadian Institute for Health Information by the IJB and Toronto Star.
Patients and family members across Ontario who filled out surveys sometimes included heartfelt personal pleas to hospital leaders urging them to address shortcomings that undermined care.
The mother of one patient at a hospital in southwestern Ontario wrote: “I have filled out a couple of these surveys, thinking every and all info is important for people to learn and make better — but I am disappointed, when I return and nothing seems to have changed.”
Another commenter wrote: “We need to do more. And it starts with surveys like this. Please help us.”
‘Nothing more valuable’ than patient’s voice
The surveys obtained by the IJB and Toronto Star ask patients dozens of questions about the care they received. Among them, whether they waited too long for a bed, how often their pain was managed, how often they were treated with courtesy and
respect and their overall rating of the hospital. Patients can also leave written comments.
NRC Health organized the results to allow hospital officials to compare their numbers with other hospitals and flag areas that need attention. These “benchmark” reports were typically sent to hospitals on a quarterly basis.
The OHA contract with NRC Health ended last year, raising questions about the future of comparative patient-experience surveys in Ontario. While the OHA is recommending that hospitals use the survey tool of a new research firm, individual hospitals in Ontario can still opt out in favour of their own surveys. Hospitals that use standardized surveys on the new tool and send their data to the OHA will be able to benchmark their performance.
“Ontario hospitals support the public reporting of patient experience data because they believe in transparency and accountability to the patients they serve,” the OHA says. “Planning for public reporting in the future is under discussion.”
A month before hospitals lost access to their online NRC Health portal containing their survey data in July 2022, the OHA told the province’s hospitals to download their results to enable historical analyses or lose them for good.
At least seven hospitals permanently lost access to all their patient comments because they did not download them.
Brockville General Hospital discarded the comments sections of surveys, where patients took time to write out details of their experience. The explanation was that the comments had contained a lot of detail that the hospital had generally not used in the past.
Brockville’s patient data from 2017-2018 to 2021-2022 shows the hospital frequently scored “significantly below” other Canadian hospitals that also used NRC Health surveys when patients were asked how they rated the hospital overall.
When later asked for comment about the decision not to save the data, a hospital spokesperson provided a different explanation: “NRC comments were reviewed, … then addressed accordingly. They were not formally downloaded.”
Toronto’s Humber River Hospital confirmed its staff “did not receive nor download the comments files” that NRC Health collected but offered no explanation why.
“There is nothing more valuable to the health-care system today than the voice of the patient,” says Keith Adamson, an associate professor of social work at the University of Toronto who has conducted research related to the surveys. “Good leaders would be open to not just hearing those stories, but acting on them.”
Disparities between hospitals’ ratings revealed
The results also reveal vast disparities in care between hospitals, with some consistently ranking well above average among patients, while others show startlingly substandard quality on nearly every metric year after year.
Smaller, rural hospitals often score higher in patient experience surveys, in part because they provide fewer complex medical services compared to bigger hospitals. But experts say patients in small communities also tend to feel a stronger glow of local pride and personal familiarity with hospital staff and physicians.
Pembroke Regional Hospital, a facility about 150 kilometres northwest of Ottawa that serves a population of roughly 55,000 people, is among the highest-rated hospitals in the province. Between 2019 and 2022, patients rated the hospital as “significantly above” the benchmark for 60 per cent of all questions asked.
“The doctors made me understand things better,” wrote one patient. “The nurses were unbelievable. Thank you for everything from the bottom of my heart.”
In a written statement, the hospital attributed its positive survey results to including “the patient voice in our care.”
Scarborough Health Network had consistently poor patient assessments. Compared to other Canadian hospitals that used NRC Health surveys, SHN’s hospitals significantly underperformed on more than three quarters of questions between 2016-2017 and 2021-2022.
Scarborough Health Network had consistently poor patient assessments. A health network spokesperson say the hospitals take “all patient feedback seriously.” Photo credit: Riziero Vertolli/Torstar
In some years, Scarborough Health Network’s in-patient care was “significantly below” Canadian hospitals on 90 per cent of all questions asked.
“While my mother was having her first stroke, I was frantically using the call button to page my nurse because I knew something was wrong,” wrote the child of a patient who was at Scarborough Health Network in 2019.
The commenter alleges that after a misdiagnosis and “countless delays,” their mother suffered a second stroke a few days later from which she never recovered. “If my concerns were taken with proper urgency … the outcome may have been different. I certainly hope (for) proper action … although nothing can bring my mother back.”
When asked about the negative patient comments, the hospital said in a written response: “We apologize to all our patients and families whose experiences did not meet their expectations. We cannot specifically speak to anonymous patient comments, since we have no way to investigate and substantiate the incidents … With that said, when we receive patient or family concerns, our normal process is to investigate any concern brought to our attention.”
SHN added that the NRC Health survey results reflect “a very small number” of patients at the hospital network. Because they were only available in French and English, “this data may not fully reflect our patient population, particularly when you consider that Scarborough is one of Canada’s most diverse communities,” the statement reads. “We continue to take all patient feedback seriously.”
Niagara Health’s emergency departments (EDs) scored below the average of comparable Ontario EDs on all but two questions — 98 per cent — between 2016- 2017 and 2020-2021.
Niagara Health said a “severe” regional shortage of family doctors means more patients use the hospital network’s understaffed emergency departments.
One patient reported they entered a Niagara Health emergency department in December 2019 feeling “intense pain.” Approximately eight hours into their stay, the patient wrote, they were diagnosed with appendicitis. They did not receive surgery until approximately 20 hours after entering the hospital.
“They found that my appendix had ruptured and they found a ‘mess’ inside me,” the patient wrote. “My life was put in danger by a total disregard of the severity of my condition … I truly hope no one else is made to experience [what] I went through. But with our health care system as it is today, I highly doubt it.”
Niagara Health says it has undertaken measures to improve its emergency departments, including hiring more staff.
Hospitals’ score cards were once public
From the late ‘90s until 2008, many Ontario hospitals proactively published their patient-survey data through public report cards that compared hospitals’ performances.
The disclosure was a “brave step” in transparency, says Adalsteinn Brown, who worked with the OHA and Ministry of Health on the reports. (Brown is now dean of the University of Toronto’s Dalla Lana School of Public Health, where the IJB is based.)
“Unfortunately, those hospital report cards were discontinued.”
After government funding cuts brought an end to the report cards, the OHA helped hospitals continue using patient surveys so they could see how they compared to one another — a commitment that Brown says should be commended, despite “challenges in the spread and the release of patient experience data.”
Some of the most poorly performing hospitals withheld the records from reporters for months and even years.
Norfolk General Hospital in Simcoe, Ont., took two years to provide data requested under freedom-of-information legislation. When it did, the results were awash in red, indicating they were significantly below other hospitals on 78 per cent of all questions.
The hospital has not scored significantly above the benchmark on any indicator since at least 2016-2017.
One patient wrote of their March 2017 stay: “I slept with my soaked underwear/stool at night.” The patient alleges they left the hospital with a bedsore.
In a statement, Norfolk General Hospital said it highly values the input of its patients. “When individuals come forward with their feedback, we take their concerns seriously and work towards a resolution to ensure their needs are met, and necessary improvements are made.”
Windsor Regional Hospital consistently scored “significantly below” the average of other hospitals in patient surveys. Photo credit: Richard Lautens / Toronto Star
Windsor Regional Hospital took nine months to provide five years’ worth of data, including more than 2,000 patient comments — after it initially said it did not use NRC Health surveys at all. The hospital said there had been “internal miscommunications” and “a misunderstanding … on our end.”
The results show the hospital is providing services that consistently scored “significantly below” the average of other hospitals.
Windsor Regional Hospital said it uses patient surveys, among other tools, to make improvements to its patient services.
At last, her voice is heard
More than two years after her biopsy, Ramasamy, a former financial analyst, needs help with basic tasks such as cooking and grocery shopping, and she hasn’t driven or taken public transit since.
She harbours no anger for the medical staff who treated her, instead seeing them too as victims of a “broken system.” For that reason, she asked the Toronto Star and IJB to not name the hospital where she had surgery. “Nothing was any one person’s fault.”
Vinesha Ramasamy is speaking publicly about her experiences as a patient harmed by the health-care system because she hopes it can help drive change. Photo credit: Steve Russell/Toronto Star
She is speaking publicly about her experiences as a patient harmed by the health care system because it gives her a “glimmer of hope” that she can help drive change in a way that answering surveys did not.
In October, Ramasamy stood at a podium on a stage overlooking a hotel ballroom packed with more than 100 staff members of a non-profit anti-cancer organization.
She had shown up to the event later than planned because of side effects from her medications, and prior to walking onstage, she sought refuge in a back hallway because her condition made the ballroom’s chatter and bustle overwhelming.
But now, in front of a microphone, she looked composed as the room quieted to hear her speak.
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With analysis by Andrew Bailey, freelance data analyst for the Star
With contributions from Sakeina Syed, Alina Snisarenko, Blair Bigham and Alia Campbell of the Investigative Journalism Bureau
The Investigative Journalism Bureau is a non-profit newsroom based at the University of Toronto’s Dalla Lana School of Public Health.
This investigation was supported with funding from the Data-Driven Reporting Project. The Data-Driven Reporting Project is funded by the Google News Initiative in partnership with Northwestern University | Medill.
The Investigative Journalism Bureau is a non-profit newsroom based at the Dalla Lana School of Public Health.
The story was originally published on the Toronto Star website.