Inertia Creeps — Cover
Photo by Jacklyn Atlas
The possibilities for medicine in our high-tech era are nothing short of astounding. But the health system is choking on the pace of progress, hampered by old-school management and humbled by the enormity of change needed to realize our ambitions.
By Marcia Kaye
In 2007 Patrick Sullivan’s toddler son, Finn, at a tender 21 months old, was diagnosed with rhabdomyosarcoma, a cancer of the soft tissue that mainly affects children. At that time, 30 per cent of kids with rhabdomyosarcoma died within five years, a frighteningly high death rate unchanged for decades. Sadly, the bouncy, fun-loving Finn got sicker and sicker, and died at age three.
Has medicine changed since then? Well, over the past decade we’ve seen huge strides in genomics research, sophisticated technologies and the very beginnings of personalized medicine. We have a health care system that costs $219 billion, almost a 50 per cent jump over 10 years. Almost a third of that is private, including money pouring in from survivors and families running and cycling in fundraisers all over the country; Team Finn, a volunteer-based group of Sullivan family and friends, has alone raised more than $2.5 million for pediatric cancer research and support. And the death rate for children diagnosed today with Finn’s condition? “It’s the very same,” says his frustrated father. He’s right: It’s still a scary 30 per cent.Sullivan doesn’t fault the competent, compassionate health care professionals who did their best to care for his son. But even when Finn was palliative, there were no clinical trials offered, no way of accessing any of the new treatments or strategies that were showing promise in research. “The system is still very paternalistic and overly protective,” says Sullivan. “But at what cost?” He cites a scene from the popular movie Finding Nemo, when distraught father fish, Marlin, searching for his missing son, Nemo, says, “I promised I’d never let anything happen to him.” Friend Dory replies, “Well, you can’t never let anything happen to him. Then nothing would ever happen to him.” Sullivan, a passionate patient advocate working to educate policy makers and the medical community to address barriers to pediatric cancer trials, agrees. “If you’re so afraid of anything bad happening, then how can anything good happen?”
Barriers to clinical trials are just one concern, but surely a little more money would solve all the problems — wouldn’t it? Unfortunately, the issues run deeper. In the 2014 Commonwealth ranking of health systems in 11 countries, how did Canada rank in overall quality? Not first. Not second. Not even in the top five. No, Canada came second-last. The United Kingdom ranked first overall, despite spending less per capita than we do. Sweden, Australia, Germany, France and New Zealand all spent less and scored higher than Canada. The US, whose health expenditures were by far the highest, scored lowest. But on several measures, we came dead last: On sharing of electronic data among physicians, wait times for emergency care or to see a specialist, and delays in informing patients of abnormal test results.
Clearly, more money doesn’t always equal better out-comes. Increasingly, health policy experts are call-ing for big-picture changes in the way we develop, organize, teach and deliver medicine. Since the health care system is so massive, fragmented and unwieldy, change seems daunting. Research and technology are advancing, but government change is notoriously slow, and legal and privacy issues can hamper clinical trials. Busy physicians are often in survival mode as they see many patients, leaving little time to think about “the system.” Moreover, many Canadians still cling to the outdated model of the hospital as the place to go when you get a rash on a weekend or need stitches for a cut. But with the rise in chronic dis-ease, the aging of the population and the increase in complex conditions, we’re going to need real change. There are four areas of medicine in particular where the urgency for new thinking is great, and the opportunity for improvement is exhilarating.
Make Big Data Work — for Real
Dr. Shawna Silver (PGME’11) is a staff pediatrician at Toronto’s Hospital for Sick Children and North York General Hospital, but she’s also a former computer systems engineer. She’s in the habit of checking e-re-cords on every patient she sees, using the Electronic Child Health Network, an Ontario-wide integrated network accessible to authorized providers. Available for more than 10 years, it’s a rich resource, allowing comprehensive reporting, as often patients have been seen at different hospitals by many physicians and undergone many tests. Lots of doctors, however, including many younger ones, don’t use the network or may not even know how to use it.
“I think the feeling is that it takes too much time,” Silver says. “Everyone is really busy and wants to focus on the patient.” But taking the time upfront to learn about the patient’s journey, she says, can make an interaction with a patient and family more productive, as well as save time and money by not repeating tests.
For a profession founded in science, doctors don’t receive nearly enough training in data science, says Gary Bader (PhD’03), a professor at UofT’s Donnelly Centre in the Departments of Molecular Genetics and Computer Science. A computational biologist (and Silver’s husband), he analyzes big data to answer biomedical questions, such as using genetic profiles to predict autism years before the conventional behavioural methods. He says data science is well established in the airline, automobile and tech industries, which capture and analyze huge amounts of data to optimize their businesses. But the medical system is sorely lagging. “There’s a lot of opportunity for doctors to use more data science to help make decisions, save time, reduce testing, lower costs and increase safety,” says Bader, adding that data science can also expedite clinical trials.
A bigger barrier may be the difficulty in getting patients to share their medical information. That reluctance is understandable, especially in light of recent court cases. In Ontario, hospital staff received convictions for snooping into patient files, including the e-records of the late former mayor Rob Ford, and selling information about new mothers to financial advisers flogging education investments.
The security of medical data is crucial, but Bader says Canada’s current legal frameworks make medical research cumbersome and expensive. Getting consent from even a smallish cohort of 1,000 patients requires a full-time phone staff. What’s needed is for politicians, lawyers, ethicists and computer scientists to devise a more workable legal framework that maintains privacy and security, says Bader. He also suggests that when patients come into the hospital, they be given the option of providing informed consent that gives more general access to their information for research purposes. Only 25 per cent of patients who come through hospital doors in Ontario are ever enrolled in a study. At the US Mayo Clinic, it’s 100 per cent.
Increasingly, patient advocacy groups are taking the lead and creating their own online data centres where patients and families share stories and medical information. Bader says that just as with Facebook and Google Services, we could customize our privacy settings on what medical info we’re willing to share in order to match us up to clinical trials, facilitate research and move it more quickly to patients. “Otherwise,” Bader says, “you’re wasting time and people are dying.”Of course regulators have to make sure that a technology does no harm, says Molly Shoichet, professor at UofT’s Department of Chemical Engineering and Applied Chemistry and the Institute of Biomaterials & Biomedical Engineering. But we need to change the regulatory framework to advance things faster. “Nobody wants to harm anyone,” she says. “But we have to start asking what harm we do by not changing.”
In 2015 her team made a headline-grabbing break-through by using stem cells to partially reverse blind-ness. How long might it take to move that technology from the lab to the bedside? With current regulations, up to 17 years.
Get Out of the Hospital
Thirty years ago, if you had a family doctor and knew where the nearest hospital was, your health needs were pretty much covered. Today, with a population that’s increased by half, an aging society and a rise in new infections and complex conditions, the traditional hospital-based model of care won’t cut it any-more: the majority of our health dollars today go to drugs, home care, long-term care and public health.
We need to greatly expand the out-of-hospital universe, says Michael Decter, chair of Patients Canada, a national organization that champions health care that works for patients. Ideally, a coordinated net-work would include, at a minimum, a primary provider such as a family doctor, home care, a community pharmacy, community paramedicine, palliative care and rehabilitation. To get there, our health care system doesn’t need a miracle cure, says Decter, a former deputy minister of health: “Just better management and governance.
”Some anachronistic systems are slowly beginning to change in today’s consumer era. Free-standing clinics are taking over some of the work that hospitals used to do; Ontario’s no-fee walk-in Urgent Care Centres treat acute non-life-threatening illnesses and injuries such as infections, cuts and broken bones, usually with far shorter wait times than a hospital emergency department. Reorganizing the way we apportion services could take the pressure off overburdened hospitals. “Why are only hospitals high-tech? Why can’t clinics be?” asks Dr. Chaim Bell, a staff physician at Toronto’s Mount Sinai Hospital and UofT Professor of Medicine. “Why do you need to go to a hospital for an MRI? It would be cheaper in the community.”
In several jurisdictions, pharmacists now have prescribing rights. Depending on the province, pharmacists can diagnose and prescribe for minor ailments such as indigestion, pink eye and eczema, renew prescriptions, give vaccinations, and order and interpret lab results. Since adverse medication interactions account for one in 10 ER visits, pharmacists’ expanded role could be a big cost saver.
But some doctors are resistant to sharing their turf, even though more and more people are seeking care from alternative providers such as physiotherapists, chiropractors, personal trainers, nutritionists and acupuncturists. “Some doctors think patients are harming themselves and wasting money,” Decter says. “But others have genuinely embraced the partnership.” The boomer generation started that trend of a wellness team, Decter says, and the millennials will insist on it.
Rethink Chronic Disease
In some ways, we’re victims of our own success. Diseases that used to kill us— diabetes, AIDS, heart disease, many types of cancer — have now become chronic illnesses that we live with and must manage. The problem: People are still landing in ERs with entirely predictable exacerbations of chronic diseases. “So instead of treating those things as surprises every time, we should proactively be trying to help people figure out where else they can go other than the hospital,” says Toronto family physician Dr. Danielle Martin (PGME’05, MPP’13), vice-president of medical affairs and health system solutions at Women’s College Hospital (WCH) and a UofT professor in Family and Community Medicine. “We need a whole suite of new services that can support people living with chronic illness closer to home and in the community, giving them a better outcome at lower cost.”
What would those new models of care look like? Programs are emerging now, including at WCH, an academic and ambulatory hospital with no in-patient beds (and whose mandate is to keep people out of hospitals). One program enables a family doctor to contact a specialist by phone or electronically while the patient is sitting there and get advice about what investigations or treatments to pursue, thereby circumventing the ER. A similar program in BC called RACE (Rapid Access to Consultative Expertise) has won awards for excellence and innovation.
Women’s College also has a program allowing primary care physicians quick access to advanced imaging, such as CT and MRI, for patients in acute situations who would otherwise have to go to hospital. The WCH Institute for Health System Solutions and Virtual Care, founded by Martin and her colleague Dr. Sacha Bhatia, has also been working with the Ontario Telemedicine Network, a not-for-profit organization funded by the Ontario Ministry of Health and Long-Term Care, to develop new models for home monitoring of people with a variety of complex chronic illnesses.
Getting the government and the media excited about home- and community-based programs is a tough sell, says Decter. “The oddity is that we ration care that would help people with diabetes or asthma or Alzheimer’s be better looked after in their community, but when you get to the extreme stages, we spend lavishly, when we can do the least amount of good.” He says among Indigenous people in northern Manitoba, the diabetes rate is three times the national average, and the foot amputation rate a startling 15 times higher. There’s no foot care, no diabetic shoes, no treatments for foot ulcers. “So when it gets really bad, they medivac you out to the Health Sciences Centre in Winnipeg and amputate your foot, at a cost of $74,000,” Decter says, which is in addition to the massive human cost. “That’s a failure of the health system.”
On the other hand, prevention programs can translate to huge savings. Respirologist Dr. Graeme Rocker (PGME’93, MHSC’01) started a Halifax-based pro-gram that teaches people how to manage their chronic obstructive pulmonary disease (COPD) at home, using breathing exercises and an action plan for flare-ups. This modest, low-tech program has the potential to save $688 million over five years for the 14,000 Canadians with advanced COPD alone.
Physicians: We Want You!
In order to change a system as massive and diverse as ours, we need to struggle against the inertia of the status quo, says Decter. “A million people in Canada get up every morning and go to work in the health care system, and they largely do what they did the day before,” he says. Physicians in particular have often seen themselves as outside the system, because of the way they’re paid, their history as independent entrepreneurs, and the culture of separateness our society has historically supported. So does that mean that if we’re looking for fundamental change in the system, we shouldn’t look to doctors?
Quite the contrary, says Martin, a family doctor her-self. “To me, that’s the big emotional or mental tran-sition that needs to happen in medical practice,” she says. “Until and unless physicians see ourselves as part of the system in which we function, we’ll continue to see our job as just going to work every day and seeing patients and going home, and we will always wait for someone else to fix the system.” (Martin explores this in a book due in early 2017, Better Now: Six Big Ideas to Improve Health Care for All Canadians.)
There are major tensions or conflicts that will soon force change. On one hand there’s the exciting new world of personalized medicine, involving expensive tailored diagnoses and treatments based on patients’ genetic profiles. And on the other hand there’s the need to address social determinants of health such as poverty for the population at large. “It’s hard for decision makers and the media,” says Decter. “It’s far more compelling to put somebody on the front page of the paper saying, ‘I’m going to die if I don’t get that medicine’ than it is to spend time getting First Nations kids an education so they don’t end up living 8.2 years less than the rest of us.” Another tension is between high technology— which can involve fast, expensive, often invasive fixes — and slow medicine — encouraging overall wellness to support the body in healing itself.
These conflicts aren’t mutually exclusive but in fact are productive tensions that can result in fundamental change, Martin says. But finding a path that takes into account these seemingly divergent views needs a conversation about values. For example, if we truly value equity in Canada, we can’t focus solely on personalized medicine at the expense of population health. We need both. But what does that mean for doctors? “It might mean not being able to do every single thing for every patient every time, in order to have adequate resources to help most of the people most of the time,” she says. It could involve counselling a patient with a sore knee about losing weight and exercising instead of automatically ordering an MRI, at a cost of $1,000 to the system.
“I don’t think physicians can expect governments or hospitals or institutions to take the lead on that work,” Martin says. “Doctors and medical researchers need to be right out there saying, ‘We want to be helping lead this conversation.’”
So our beleaguered health care system may not be at a moment of crisis at all. It may be at a moment of opportunity.