ST. JOHN'S, N.L. — Part 1 in a continuing series
It’s 10 years after a damning report was released on the biggest health-care scandal to hit Newfoundland and Labrador, and there’s still a number that cannot be told.
And that is, how many affected patients are still alive.
The report on the Cameron Inquiry into how tests to determine breast cancer treatment at Eastern Health were botched was released to the public in 2009. Scandal ensued over the shoddy public disclosure.
The report stemmed from a public inquiry led by Justice Margaret Cameron.
About 425 breast cancer patients received the wrong results from hormone receptor tests — used to determine treatment options — between 1997 and 2005 from what was then the Health Care Corp. of St. John's.
The errors were discovered in 2005 at Mount Sinai Hospital in Toronto — the same year that an amalgamation of services made Eastern Health the largest health authority in the province.
The communication with patients about the mistakes and new testing results was so fraught with delays and misinformation that the debacle ballooned into a scandal, prompting the inquiry to be called in 2007. Ninety-eight witnesses testified over 128 days in 2008.
Thousands of breast cancer patients were ultimately retested as a result of the errors and Eastern Health settled a $17.5-million class-action lawsuit.
In the wake of the scandal, the numbers of those affected changed at different times, and in 2010 it was said 126 breast cancer patients had died since the errors were discovered, though it can never be known if the deaths were attributed to treatment decisions associated with the errors.
Eastern Health can’t say now how many patients among those affected have since died —not without embarking on a research project.
They were never tracked as a group after the initial updates.
The patients received treatments where deemed necessary after their files were reviewed by a panel of specialists, including oncologists, pathologists and surgeons.
“So, once that was done and the patients went on a new treatment regime, then they were put back in our regular system,” Eastern Health CEO David Diamond said.
“So we haven’t been following them as a cohort or treating them as a cohort. They are individual patients in our system. So, when you ask how many people would be deceased since then, that’s not a number — I mean I guess as a research project it is something we can do, but we would have to go back through our electronic systems and get the proper approvals through privacy to actually be checking up once you go back in the system.”
Diamond said the decision not to track the patients as a group was made before his time at the helm of Eastern Health. He is the second CEO since the scandal.
The Telegram obtained an exclusive interview with clinical chief of cancer care Dr. Jehan Siddiqui and clinical chief of pathology Dr. Altaf Taher, in order to update the public on the Cameron Report.
What has changed?
A lot has changed at Eastern Health in a decade.
One thing that won’t change any time soon, though, is where the tests — estrogen receptor and progesterone receptor and Her2/Neu — used in the decision-making for the treatment of breast cancer are performed.
They are sent to Vitro Molecular Laboratories in Miami, and while the plan is still to bring them back eventually, it’s the right thing for Eastern Health for the foreseeable future. “Part of the challenge for us is we found this lab Vitro and the turnaround times are very good and the pricing is very good, and the level of expertise is international quality,” Diamond said.
In 2018, it cost Eastern Health $2.6 million to send laboratory tests out of province. During that timeframe, the total cost of biomarker testing (ER, PR & HER2) at Vitro labs was approximately $148,000.
“Our pathologists and our oncologists and folks who work in radiation therapy are so comfortable with them and we have also had some vacancies. We haven’t had all the right skill sets over time.”
Eastern Health was not able to recruit a specialist in breast pathology since the scandal. However, one doctor is away training for the specialty, and another is set to leave this summer to train, said Taher.
“Really, we need the breast pathologist, and they tried long and hard to recruit and that hasn’t happened,” Taher said.
The tests have gone to Miami since 2014. Turnaround times were found to be better than mainland centres in Canada.
“One thing we noticed was the centres of excellence in Canada, the turnaround time was very long,” Taher said.
“It used to be sometimes three weeks or four weeks, and the oncologists were not happy with that, as they had patients waiting for treatment. So, then we did cost matching with Vitro.”
Eastern Health collects the tests and receives the results for the entire province.
Pathologists scrutinize the trends every month to ensure the results are within the expected metrics or international accepted rate. Otherwise there would be huge red flags. As well, oncologists do the same scrutiny, so there are layers of checks — the interpretations in Miami, followed by an examination of trends twice within Eastern Health.
“Basically, it’s a kind of three-layered quality control, so nothing slips through,” Taher said.
About 400 hormone receptor tests are sent to Miami each month — the number fluctuates — but that doesn’t mean they are all new cancers; they could be repeat testing.
Technology and science are ever-evolving, and the hormone receptor tests aren’t the only ones that are sent out; it makes sense that certain tests would never be performed in the province, given the small population. Certain things are better left to centres of excellence that handle higher volumes, allowing them to specialize.
“The new techniques that have come up and the new genes that have come up with certain cancers is so new that nobody in Canada also has them. You have to send them out,” Taher said.
The infamous lab
The pathology lab that was embroiled in the scandal and revealed to be under-resourced has changed radically since the Cameron Inquiry. It received the highest level of accreditation by the Institute for Quality Management in Health Care in its last audit.
Several years ago, an independent review of the implementation of the Cameron Inquiry’s recommendations found that only one had not been carried out, and that was the hiring of a vice-president of quality control. There is a person in that role, but quality is not their sole duty.
However, said Diamond, every vice-president and every clinical chief has a responsibility for quality control, so he is confident the authority has gone above and beyond on that recommendation across all programs.
There’s also a team of quality experts who report to the VP of quality, and every program has a quality committee.
“I have been in the organization almost five years and I feel, coming into the organization, I have inherited quite a robust focus on quality and safety,” he said.
“Which I guess — from a very difficult period that no health-care organization would want to go through — I think, coming out the other end, we actually have quite a robust focus on patient quality and safety,” Diamond said.
Eastern Health received accreditation with exemplary status overall on its most recent Accreditation Canada audit.
“I think out of this very bad situation, we’ve now developed into an organization that is very focused, and I think our cancer program and our lab program as two of the areas intimately involved in Cameron are two stellar areas, from my perspective, where quality and safety has become critical top priority for them,” Diamond said.
Winning back trust
As the scandal unfolded, revelations from witness after witness shredded faith in Eastern Health, and as the debacle dragged on with more glaring missteps, including a patient getting an apology addressed to someone else, it seemed the health authority might never gain back public trust.
Siddiqui said the openness of how the recommendations were satisfied by Eastern Health has helped heal that rift.
“Our patients feel it very easy to come up with their questions and we try to answer them,” he said. “So, I personally think that going through all that and ensuring we are following the quality assurance guidelines … I think the trust is there.”
Ultimately, said Siddiqui, the authority did the right thing for patients in reviewing their files and revising treatment where necessary.
Trust, said Diamond, is difficult to gain and easy to lose. But he took comfort in a cancer patient survey that suggested 97 per cent of people either saw the quality of their care as good or very good.
But as for whether Eastern Health has been forgiven, that’s not something Diamond will speculate on.
“I don’t know if that’s even, if that’s what we are looking for. We honour the people who are impacted by this with our heads down and shirt sleeves rolled up every day, and making sure we do everything we can to make sure it doesn’t happen again,” he said.
“I am very pleased that people who are getting cancer treatment now feel comfortable in our system. That’s gratifying, but I never take that for granted. I think that if there is anything positive to have come out of this experience it is that dogged approach to safety and quality that I have seen in other organizations, too, but it is certainly daily present in Eastern Health.
“I don’t know that a month goes by that we don’t hear someone refer back to Cameron and, ‘What did Cameron say?’ ‘What were the recommendations in Cameron?’ So this is very much a part of the daily business here.”
Diamond said it wasn’t just Eastern Health that got a rude awakening. He was in Alberta when the scandal was unfolding.
“I think for many of us working elsewhere in the country, it was also a time of reflection, because it could have been any one of a number of organizations in the country. It just happened to be Eastern Health that was first out the gate on this. And I think the whole country has learned, not just about this particular test and these issues, but how to do disclosure and deal differently with patients and involve them, so I think Eastern Health — the patients and the health system and the government and everything that went on here — as difficult as that was, I think the whole country learned lots and I saw that from being out West and looking in and adjusting practices there as a result of what was happening here.
“It was certainly a difficult time. If there is any positive — and I can only imagine the difficulties of just about everyone who was associated — but I think at the other end there is a robustness now about the approach to quality and safety in Eastern Health and I think that informed many other jurisdictions in the country as well. And so, I think as a country this is broader than just Eastern Health — lots of people have learned through this exercise. Hopefully, as a health system and as a province, then again for the folks who lived through it and the patients and families, the experience of this, no one would ever want to have gone through that. I think the best way we can honour the folks that were associated by this is to make sure we are doing everything we can to ensure as best we can that it never happens again.”
As for the disclosure disaster that drove the errors into a full-blown scandal, that might be harder to replicate given the 2017 patient safety legislation that mandates rules for reporting of multiple patient incidents to the government, Diamond said.
Whereas a decade ago, Eastern Health and other organizations similar to it around the country were at a “very basic level,” he said.
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Monday: A mother gone too soon: patients' stories
