Six years after she had surgery to repair a broken femur, Emily Nicholas Angl developed pain in her hip that became so debilitating it left her keeling over on the sidewalk.
A CT scan suggested a problem with the bone in her hip. She was scheduled for an MRI to determine the extent of the bone’s deterioration, but first had to undergo surgery to remove the metal pins left in her leg.
She was 28 and almost entirely immobilized. She couldn’t go to school or work, and her mother had to move in to help care for her.
While Nicholas Angl waited, she wondered, how long would she have to wait before life returned to normal? And would it ever be normal again?
It was 2010, six years after the 2004 Health Accord challenged provinces to reduce health system wait times in five key areas: cardiac care, cancer care, diagnostic imaging, cataract surgery and hip and knee surgeries.
Yet despite the political pressure to find ways to speed surgical wait times, Nicholas Angl waited three months after her MRI scan to have hip replacement surgery, even after being classified an urgent priority and placed on an emergency wait list.
“It’s still amazing to me that I was considered an emergency but waited that long. I thought it would maybe be a few weeks,” she says.
While the Health Accord was successful in bringing the focus to wait times – since 2004, provincial and national wait time targets have been set for 16 specialties, representing more than 1,000 procedures, tests and consultations – the setting of these targets was largely based on scientific evidence and literature searches. Unlike other areas of health policy, patients were not part of the discussion.
“Patients have not been involved as much as they should,” says Chris Simpson, a Kingston-based cardiologist and former head of the now-defunct Wait Time Alliance, a physician group formed in 2004 to monitor and report on wait times across the country.
“It was a different time,” says Cathy Cattaruzza, the former Access to Care director at Cancer Care Ontario. “It’s only in the last four or five years that patients have finally gotten an appropriate voice to influence policy.”
Yet as Nicholas Angl points out, for patients the targets can be difficult to understand. Is the target an ideal? An expectation? An average? Or a calculation based on how the system currently works?
“I think this is why wait time targets don’t tend to resonate for patients,” says Nicholas Angl, who has acted as a patient advisor to the Canadian Institutes of Health Information and Health Quality Ontario, among other organizations. “Targets have never been very friendly in their reporting, let alone in having patients involved in the devising of them.”
Reflecting the realities of waiting
Some patients would prefer to see wait time targets that incorporate more than just scientific evidence – they want targets that factor in what it’s actually like to wait.
“The experience of waiting can be one of the most difficult of the health care journey – and often forgotten because we’re not in the institution and not in any measurable part of the system,” Nicholas Angl says. “You sort of feel neglected. You’re in pain, and it’s only you who has to deal with it.”
The whole system of wait time measurement may have been set up differently had patients been involved, says Alan Hudson, a neurosurgeon and the former lead of Ontario’s Wait Time Strategy. The glaring media spotlight on the issue meant most provinces began in 2004 with what could be measured, not necessarily what should be measured.
“From a patient’s point of view, there are many other wait times – waiting for an MRI, waiting for test results. From a patient’s point of view, it’s the whole continuum. All these other wait times should be considered,” Hudson says.
“Anxiety is a hugely important factor,” he adds. “We’re supposed to be looking after the patient and if the patient’s anxious, it means they’re not functioning normally. You can’t just ignore it.”
Waiting for specialist care, diagnosis or treatment
For Linda Wilhelm, President of the Canadian Arthritis Patient Alliance and a member of the Best Medicines Coalition, waiting for her family doctor to refer her to a specialist, and then waiting for a specialist to confirm a diagnosis of rheumatoid arthritis cost her the opportunity to start treatment early, which could have slowed the progression of her disease.
For Cathie Hofstetter, chair of the Patient Advisory Committee at the Ontario Best Practices Research Initiative and a patient representative on the Ontario Rheumatology Association’s “Models of Care” Committee, waiting for paperwork to be approved to access biologic treatment needlessly left her in debilitating pain.
“When you’re diagnosed with something like rheumatoid arthritis, the main thing is the unbelievable, unbearable pain,” she says. “When they told me that I’d have to wait two or three months, I was just about ready to climb to the roof and jump off. I kept saying somebody’s got to do something for me now! Somebody’s got to help me deal with the pain, please!”
At the time wait time targets were being formulated, neither access to specialists nor access to medications were being tracked. In most provinces, and with many specialties, they still aren’t being captured today.
“What has to enter into it is the concept of what it’s like to be a person who is waiting,” Nicholas Angl says. “If you’re talking about creating a patient-centred system, then what has to enter into it is how it feels to be that person in that situation beyond just a very broad priority level. We have to consider the different types of experiences of different types of waits.”
Marrying evidence with patient experience
Wait times target were initially set in one of two ways, Simpson says. They were either influenced by evidence or set by government.
Both Hudson and Simpson remember the literature being sparse when it came to pinpointing the precise time at which waiting any longer for treatment could cause harm. Think about cataract removal, Hudson says. There is little evidence that waiting has any impact on the surgery’s success. Simpson, meanwhile, points to the “clinically ridiculous” six month wait initially set by provincial governments as appropriate for cardiac surgeries.
It can be a challenge for those who set, monitor and report on wait times to incorporate the softer aspects of patient experience into a process that was designed to rely on hard evidence. That’s why most agree they should go hand-in-hand, each reinforcing the other.
“A patient story is a different way of presenting data,” says Annette McKinnon, a member of the newly-established Patient Advisors Network.
“Even those who bring a scientific lens to this, they’re still motivated and inspired and critically informed by the narratives that go along with it,” Simpson agrees. “The data we get, they just don’t bring the issues to life in human terms as a patient’s narrative can.”
Setting system targets that meet patient expectations
The arthritis community may offer a model to follow.
Two years before wait times became a hot-button topic, the Canadian Arthritis Patient Alliance developed a Bill of Rights suggesting patients had a right to see a rheumatologist within six weeks of the suspicion of arthritis.
At the time, rheumatologists pushed back. They knew there was no way their practices could handle the demand – their wait lists already stretched six months or more.
“Although it was a great idea, it’s the kind of thing you’ve got to push to the high-level decision makers,” says Claire Bombardier, a rheumatologist at Mount Sinai Hospital and University Health Network, who was leading the development of guidelines for the Canadian Rheumatology Association. “Just saying this is the target and putting it in the doctor’s office is not going to do anything.”
Yet the guidelines eventually set were even more aggressive, pushing for only four weeks to diagnosis for rheumatoid arthritis, the most severe type.
That’s because the evidence about the effect of waiting – poorer outcomes and greater risk for disability – was starting to come in. Biologic drugs had come on to the market and had been found to halt the disease.
“Rheumatologists realized they really needed to shorten it up,” Hofstetter said.
To help meet the target, a pilot project was recently set up in Ontario incorporating physiotherapists with advanced training into rheumatologists’ offices to help triage referrals. Initial results – which Bombardier will present this month at the annual American Rheumatology Association conference – show average wait times to a diagnosis at the pilot sites plummeted from three to four months to only three weeks.
Willing to wait
Bombardier says results of the pilot show patients who were not assessed to be high priority did not mind waiting to see the specialist while other more urgent cases moved ahead: they felt their worries and concerns were being addressed by the therapist, who could give advice on exercise and other tactics to manage their pain until they did see the specialist.
That may seem counter intuitive, but those involved in both setting wait times and advocating for patient care say Canadians seem willing to wait – so long as urgent cases have a way to float to the top of the list and no one is left feeling forgotten.
“I really find that patients are extremely patient – they accept that there’s a time element to getting stuff done, particularly in complex diagnoses and therapy pathways, where there are lots of different tests in lots of different locations. They have a lot of tolerance for that,” Simpson says. “As long as they feel there’s coordination to the whole thing, and know it’s safe and isn’t putting them at risk.”
“I think it’s something that is uniquely Canadian,” says Wilhelm. “I’ve seen it time and time and time again. Patients are willing to wait – depending on how bad they are.”