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Elderly they may be, but Toronto patients like Helmut Braun (who is assisted by nurse Maria De Leon) are on the cutting edge of e-health progress. (Thomas Dagg)
Elderly they may be, but Toronto patients like Helmut Braun (who is assisted by nurse Maria De Leon) are on the cutting edge of e-health progress. (Thomas Dagg)

ROB MAGAZINE

After all the time and money invested, will e-health ever deliver on its promise? Add to ...

After Helmut Braun’s wife died, he turned to the Internet to find someone else to play cards with. Before long, like so many Canadian seniors these days, he’d become something of a keyboard wizard. But when Braun had a heart attack last November, the 85-year-old former barber figured he’d played his last online ace. As he lay in frightening pain in an ambulance, the last thing he could have guessed was that he would soon become a cyber-pioneer.

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But that’s what happened in the long-term palliative care ward at Baycrest Health Sciences Centre in north Toronto. One day early last summer, a nurse named Maria De Leon popped a computer tablet onto his lap and asked him if he’d mind tapping in answers to 10 basic questions, including the degree of pain that he was feeling, his appetite, his mood and his energy level. Braun still has a lot of zest despite his badly damaged heart, and he was only too happy to get back online, especially if it spared Baycrest staff from filling out the questionnaire on paper. “I’m always happy to save some trees,” he joked.

While Braun clicked off his answers on the tablet’s touchscreen, De Leon told him that, thanks to a clever computer application cooked up by software programmers in Baycrest’s e-health unit, his responses to the questionnaire–which is based on an interview form used in teaching palliative care wards in Canada–were being transmitted wirelessly into the hospital’s computerized health records system.

There were good reasons to have Braun entering his own information into the records system, according to Giulia Perri, a doctor at the unit. First, she noted, is accuracy: Patients appear to be more candid when reporting electronically, and there’s also less room for the kinds of errors that creep in when data on paper records are input into computers. Second, staff workload is reduced. Third, once Braun began reporting his own health status electronically, he might be able to also manage some of his care electronically, by doing things such as entering and monitoring his blood pressure levels, perhaps on devices with wireless connectivity to his own charts.

As Braun handed the tablet back to De Leon, she informed him he was now one of the first patients in Canadian history to have taken a role in writing his own health record. “At one time, I was against all these modern gadgets,” Braun mused about the experience. “But now I figure it’s about time the medical field catches up with technology.” Dr. Perri is similarly enthusiastic about her pioneering patient. “By getting involved in his own health information,” she explained, “he became a better patient.” She thinks he might even have a better quality of life as a result.

Braun’s experience with electronic health care is heart-warming, and it could also prove to be heart-healing. But the novelty of his experience within Canada’s public health system–which is widely seen as the country’s pre-eminent achievement–is baffling. Canadians, after all, are the world’s most intensive Internet users, and have been keenly managing their money, booking travel, filing taxes, and finding partners for poker, romance and even marriage online for at least a decade. But 20 years into the digital era, the number of Canadians with any sort of electronic connection to health providers remains almost negligible. Even the most basic e-health services such as electronic communication of prescriptions between physicians and pharmacists is rare.

Canada’s e-health disconnect doesn’t stem from a lack of effort. Convinced that electronic connections between patients and clinicians will forge better, cheaper health care, the provincial and federal governments have lavished cash on health information technology in pursuit of the sort of cost efficiencies and quality improvements that were captured long ago in banking, travel and telecommunications. The hope is that e-health will help improve health care quality while also reducing costs. There is a lot riding on this effort: Thanks in large part to an aging population apt to develop expensive chronic conditions, Canada’s $200-billion annual health bill has swelled to almost 12 per cent of the economy. And costs are still going up. “Could the elderly bankrupt Canada?” asks Samir Sinha, director of geriatrics at Toronto’s Mount Sinai Hospital. “Absolutely.”

As stark as the evidence supporting e-health investment is, progress remains dismal and Canada perennially trails other wealthy nations in annual e-health progress rankings. Although researchers long ago concluded that better health information could help save tens of thousands of lives annually, it’s estimated that 80 per cent of Canadian clinicians still rely on dog-eared sheaves of yellowing paper to make decisions that can prove life-altering. This is why the first thing many patients see in doctors’ offices is often a fax machine running full-blast against a ceiling-high backdrop of manila files. “We’re still at the back of the bus when you look at most developed nations,” says Richard Alvarez, the country’s top e-health mandarin. As CEO of Canada Health Infoway Inc., a federal Crown corporation established in 2001 to pull health care into the Information Age, Alvarez acknowledges that at least some of the criticism he faces within the e-health industry–which employs an estimated 30,000 IT specialists–is legitimate. “It’s taking too long,” Alvarez admits about Canada’s e-health quest. Much of the chafing concerns Infoway’s strategy of building massive databases rather than focusing first on connecting patients and clinicians, which, as Alvarez belatedly recognizes, “is what the people want.”

It’s a problem more than a few technology businesses are scrambling to step in and fix: Behind Braun’s tablet-tapping at Baycrest stands a global health IT industry boasting an estimated $95-billion in annual spending. In the United States, where a mix of private and public health care systems consumes $2-trillion (U.S.) annually, Washington has earmarked $27-billion (U.S.) to connect health care workers and patients. But this figure is dwarfed by the collective private spending of e-health champions like Kaiser Permanente, a California-based health management organization serving nine million patients; it has spent more than $4-billion (U.S.) to connect patients and clinicians. U.S. investment bank Piper Jaffray counts at least 750 companies positioning themselves within the e-health sector. IT spending by health providers could reach $32-billion (U.S.) annually by 2015, according to Kalorama Information, a Maryland-based research firm.

Private money is also pouring into e-health in Canada. Telus Inc., for example, has staked $1-billion on the sector in the last five years. Pharmacy chains, insurance companies and laboratory operators are also shovelling money at e-health vendors, says Brendan Seaton, president of the Information Technology Association of Canada’s health division. Numerous companies have pioneered products designed to give patients and health workers online tools to manage health records and appointments, Seaton says. Who are these vendors? The ITAC membership list reads like an alphabet on shuffle: IBM, CGI, GE, KPMG, QHR, SAP, SKE. There’s also a brand-name cohort–which, apart from Telus, includes Bell, Cisco, Microsoft and Siemens; and the hip crowd, where consultants sport monikers like A Hundred Answers Inc.

Their offerings are diverse. Take, for instance, Montreal-based CGI Group Inc., an informatics powerhouse whose global health business boasts $350-million in annual revenue and 28 per cent annualized growth over the past three years. Hospitals buy CGI systems like Sovera Health Information Management System, which Toronto’s Sunnybrook Health Sciences Centre recently chose. The system helps to scan patient charts, integrate that data with information in other systems and automate clinician workflows. It also allows patients to request an electronic copy of their medical records.

From Telus Inc., you can get just about any e-health tool you might ever desire, says François Côté, the Montreal-based president of Telus Health Solutions. Whether it’s software that distributes patient records within hospitals or an electronic platform that hooks up pharmacists to more than 100,000 patients, or an Ontario-wide database connecting 3,865 agencies and 161 hospitals that will adjudicate 55,000 drug claims an hour, says Côté cheerfully, “we’re here to help patients get better health care.” These efforts are the cutting edge in the unconnected world of Canadian health care.

* * *

The idea of using information technology to reform Canadian health care dates back to 1991, when a task force on health information called for a nationwide transformation to push down costs and drive up quality. In 1997, the provincial and federal governments agreed to work together on the issue. Four years later, Canada Health Infoway was established as a non-profit Crown corporation with $500-million in seed money from Ottawa. Its mandate was to work with the provincial and territorial governments to forge a “national health infostructure” that would ensure every Canadian’s health records are digitalized. Since 2001, Infoway has received further grants from Ottawa that now bring its total war chest to $2.1-billion.

But for all this, progress has been scant. A February, 2011, qualitative study published in the Canadian Medical Association Journal explained why. Drawing on interviews with 29 government e-health mandarins, public health officials and business executives, researchers at McGill University blamed Canada’s health technology woes on the “lack of an e-health policy, inadequate involvement of clinicians, failure to establish a business case for using electronic health records, a focus on national rather than regional interoperability, and inflexibility in approach.”

The report did not lay all the blame at Infoway’s door. But one cause of the impasse, it concluded, was that Infoway’s blueprints–issued in 2003 and 2006–centred first on the construction of massive provincial databases rather than the more basic need to get physicians connected to each other and to patients. Moreover, the Infoway-led megaproject approach proved easier to conceive than to deliver. In Ontario, for example, an $80-million laboratory information system that costs at least $15-million annually to operate has languished largely unused for years, and a $46-million diabetes information system that was intended to serve as the centrepiece of a $150-million chronic disease registry has proven impossible to build. In many respects, the Canadian experience with government-led e-health is shaping up to resemble that of the United Kingdom, where David Cameron’s government recently abandoned a $20-billion national health information plan after audits revealed massive waste and vast technical overreach.

The depth of the Canadian dilemma has been depicted in a series of official audits delineating waste in some provinces. In Ontario, where auditors found as much as a billion dollars in waste in 2009, the provincial Minister of Health resigned amid the worst scandal in the nine-year tenure of former premier Dalton McGuinty’s Liberal government. “Our main concern,” the auditors revealed about the province’s $1-billion investment in a health information network, “is that the network remains significantly underutilized.” A government-built e-mail system costing $72-million annually to operate is inferior to standard commercial systems and seldom used, the auditors noted. In 2011, the Auditor General of Quebec reported similarly dismal results for that province’s e-health project. “We consider that the project in its originally defined structure no longer exists and, in this sense, is a failure,” the audit concluded.

Such findings have, as Infoway CEO Richard Alvarez acknowledges, given e-health “a bad name.” Infoway itself has also come under the microscope. A joint federal-provincial audit of Infoway’s efforts released in 2010 raised embarrassing questions. “The provincial ministries of health and the public are currently unable to assess whether the initiative is achieving its goals and objectives, on time and within budget,” the report warned. In 2011, Infoway released a government-stipulated internal evaluation by Bell Browne Molnar & Delicate, a management consulting firm. While the report was largely positive, it concluded that Infoway had missed its self-established targets in all of its major program areas, and had only set adoption targets–basic accountability indicators that are used to measure electronic records usage–for about 40 per cent of the cases where they were needed.

Alarmed by the e-health scandal in Ontario, in 2009 federal health officials commissioned a sweeping audit that alerted the Harper government to the need to tighten controls over Infoway, which, despite its mandate to promote the free flow of information, is shielded from many transparency measures that commonly govern federally funded entities. The only publicly available information about compensation for Infoway’s top executives, for example, reveals that its executive team are together paid more than $4.6-million, with pension set-asides for one unnamed executive–widely speculated to be Alvarez–recently topped up to $1.6-million. According to documents released under federal information laws, a 2009 recommendation from the Treasury Board, calling for public disclosure of all Infoway salaries greater than $100,000, was rejected by the Harper cabinet.

Under the terms of a new funding agreement signed in 2010, Infoway is obliged to provide the government with dramatically more information about its investments, and about its results–information that Infoway and the government now choose to keep largely secret from the public. (In a freedom-of-information release of detailed information about Infoway spending requested by this writer, the relevant numbers were all blacked out by officials, who cited the need to protect Infoway’s business secrets.) One figure that the federal government has disclosed, however, is revealing: According to Infoway, it has spent slightly less than one-600th of its $2.1-billion kitty on patient-centred innovations like the one Braun now benefits from, and which Infoway’s own polling confirms to be patients’ first priority.

Dominic Covvey, president of the National Institutes of Health Informatics, a Canada-wide network of 151 e-health researchers who collaborate within a “virtual institute of institutes,” recently called for a fully independent national e-health watchdog organization to begin forcing bureaucrats at Infoway and its provincial counterpart agencies to fully disclose their investment decisions. Numerous senior observers on the private-sector side express similarly tough views about federal and provincial e-health strategies.

In a recent speech in Toronto, Michael Decter, a former Ontario deputy minister of health who served long stints chairing the Canadian Institute for Health Information and the Health Council of Canada before moving to Bay Street, ruminated on Ontario’s approach to dishing out “a big raft of untendered contracts that were much more expensive than they would have been if they had been tendered.”

While noting that Infoway, in contrast, had a clean bill of health from its auditor, Decter then turned to questioning whether Infoway’s quest for an electronic health record (EHR) for every single Canadian makes sense. “The cost of getting many people an EHR will be greater than the cost of the health care they consume,” he noted. Rather than sticking with the plan to create an EHR for everyone in the country, Decter suggested, it may be wiser to focus on delivering EHRs for those Canadians who need them most: seniors and people with chronic illnesses. Late last year, the Ontario government and the Ontario Hospital Association released data revealing that just 1 per cent of Ontario patients–most of them elderly patients with multiple chronic conditions in a category often labelled “frequent fliers” by hospital staff–consume 34 per cent of all health care spending and almost 50 per cent of all hospital and long-term care costs.

Decter offered these comments during a panel discussion with William Falk, a former managing partner in health and life sciences at Accenture Canada who was a consultant in the planning process that created Infoway. Now an executive fellow with the Mowat Centre, a University of Toronto think tank, Falk credits governments with subsidizing a now-healthy industry that grew from employing a few hundred to as many as 30,000. But he says the subsidies have created a situation where “several agencies and ministries have substantial internal software development shops which directly compete with private industry.”

Disruptive technologies such as tablets and mobile devices long ago outstripped Infoway’s blueprints, Falk says. He now worries government e-health efforts curb innovation rather than spurring it. The future of e-health, it appears, will be driven by consumer-friendly innovations such as the tablet and the consultation application used at Baycrest. But whether these will ever connect with Infoway’s network of vast databases may prove immaterial if patients begin stampeding online to manage their own health information.

In fairness to Infoway, technological change is notoriously hard to foresee, as the difficulties facing companies like Research In Motion so vividly illustrate. Even five years ago, e-health experts could not have predicted the massive popularity of mobile devices offering thousands of applications designed to help consumers manage their health information. Nor is there any doubt that the overall e-health mission is valid. Of the 105 recommendations on improving health system efficiency in a sweeping report on economic reform in Ontario by Don Drummond, the former TD Bank economist turned Queen’s University policy wonk, at least 19 focused on better use of IT.

Alizabeth Calder, chief information officer for CML HealthCare, which operates more than 200 labs and diagnostic imaging centres in Ontario, says the future of e-health will be directed not by bureaucrats but by patients. Infoway’s persistence in building a national network defies the superior logic of a patient-centred health system in which patient demands for better service should drive technology investments, she argues. As the former chief information officer of the Air Miles Reward Program, Calder knows a lot about leveraging consumerism. Government e-health programs, she believes, should long ago have started to encourage patients to use online “patient portals” to connect with health care providers electronically.

After a speech by Infoway CEO Alvarez last summer to the Toronto Board of Trade, Calder popped a crucial double-barrelled question. “Why are we not driving toward a model of a patient portal?” she asked. “Why not force it out there so the consumer can demand it?” Alvarez had just finished telling his Bay Street audience that Infoway’s difficulties in “resetting the compass” can in part be traced to the fact that “Canadians are extraordinarily passive–we still wrap ourselves in the health care flag as our identity–and we need the system to change. Canadians need to be a lot more vocal.”

But confronted with Calder’s inquiry as to why Infoway has never harnessed Canadians’ enthusiasm for all things Internet-related, Alvarez acknowledged she had a good point. The holdup, he argued, was that the provinces and territories are not ready. “It will happen,” he promised. “But first things first; they need to move with some of these larger databases and get them online.”

That’s been Infoway’s mantra for well over a decade–a lost decade, according to many of its critics.

* * *

A gorgeous backdrop of snow-capped mountains framed Darren Entwistle, CEO of Telus Inc., as he took the podium at Vancouver’s harbourside conference centre. It was the summer of 2010, and Entwistle was about to announce a deal allowing Telus to start marketing Canada’s first government-certified personal health record–a Microsoft-designed software offering aimed at giving patients electronic access to their own health records. Just months later, the Alberta government licensed it for every citizen in the province.

In a country where patients have long been forced to file complicated freedom-of-information requests in order to get access to such information, the concept of getting it online and on-demand seemed little short of revolutionary. And Entwistle wasn’t holding back from saying exactly that. “Canada’s health care system is in the midst of a challenge of historic proportions,” he began. “The only way we will answer the challenge and crack the code of health care affordability is through the effectiveness and the innovation of information, communications and technology.”

As Entwistle warmed to his theme, a raw-edged emotionalism steadily crept into his delivery. Not long ago, he explained, he’d watched his father die, an experience rendered more painful by the insights it offered into the lack of information technology available to Canadian clinicians and patients. As Entwistle explained it, his father endured a series of monitoring gaps that resulted in flawed care. At best, the movement of vital health information between caregivers in Canada “is certainly less than efficient,” Entwistle asserted, “and this assumes that the transfer of information happens at all.”

The mess surrounding health information in Canada doesn’t just inflict pain on patients, Entwistle continued, it also exacts financial costs. Noting that the use of electronic health records in Canada ranked last in a comparison with other nations by the Commonwealth Fund, a prestigious U.S.-based health care analysis centre, Entwistle slammed home his main message: “Canadians,” he growled, “have been inhibited from having access to information when it comes to their health. We are dissatisfied with the pace of change.”

The time has come, Entwistle argued, for Canadian patients to rise up and demand electronic prescriptions, e-mail contact with their physicians, and electronic access to their treatment plans and health records. These will help patients take active roles in monitoring and managing afflictions like hypertension and diabetes, he noted. In the country that leads the world in digital marketing, electronic health care is direly overdue, he insisted: “Patients no longer need to feel helpless when manila folders are misplaced along the diagnostic journey,” he added. “I believe that we can all become health workers in this country.”

Before finishing up his speech, Entwistle had some business to attend to. Thanks to its long-standing role as a health information services provider to provincial governments and health insurance companies, Telus now manages electronic health records for more than five million Canadians, Entwistle explained. As it keeps expanding this reach, he pledged, Telus will resolutely push “to drive the desperately needed change that is needed throughout our system.” Huge benefits would flow both to patients, health workers and taxpayers, he said. For Telus, which, unlike major rivals Bell and Rogers, is not engrossed in building a media empire, health care is a strategic priority. “We will not be denied,” Entwistle punched home. “Doing nothing is not an option.”

Nobody would accuse Entwistle of that. In 2008, propelled by its strong background processing health data for the B.C. and Alberta governments, Telus paid $763-million for Montreal–based Emergis, a former Bell Canada Enterprises division earning around $200-million annually from processing health care and other data. Telus’s health unit now spans 11 e-health businesses, ranging from consumer health records products to health data warehousing to cloud-based electronic records systems for clinicians. The strategy is highly acquisitive. In the consumer records sector, for example, Telus has bought innovations from developers including Microsoft and Sunnybrook Hospital in Toronto. In the clinician records arena, Telus recently acquired Wolf Medical Systems, Canada’s largest and fastest-growing cloud-based clinician records provider. Through its e-health ventures, says Telus vice-president François Côté, the company is positioning itself to be “a beautiful, beautiful catalyst” at the increasingly entrepreneurial core of Canada’s $200-billion health industry.

* * *

Dr. David Chan’s guidance for a diabetic patient was precise and personal. Which was surprising, because, rather than looking at the patient, Chan merely checked his electronic data points. After scrolling for 30 seconds through a computer file as a nurse peered over his shoulder, Chan knew exactly what to suggest. Seconds later, the nurse was on her way back to the patient with Chan’s instructions. “You can thank OSCAR for that,” Chan muttered as he swivelled toward another colleague with another patient to discuss.

The new consultation also centred on the patient’s electronic file, which Chan quickly retrieved from the Open Source Clinical Applications and Resource, or OSCAR for short. If Chan, who trained as a software engineer before entering medical school, seemed a little quicker with OSCAR than most others in the clinic, he had an explanation: “Yes, I suppose it does help that I helped to invent it,” he chuckled softly.

Chan’s humility belied the complexity and creativity of his clinical work. Each morning when he arrives at the Stonechurch Family Health Centre in Hamilton, he steps into a forbiddingly complex fusion of roles. Most importantly, he’s a family doctor who sees patients in the clinic. He also plays a big part in training medical students at Stonechurch, which is a teaching facility for McMaster University’s department of family medicine, where Chan is both a professor and director of information technology. Meanwhile, in his IT capacity at Stonechurch, Chan, along with his colleagues, has quietly succeeded in turning a modest little clinic into one of the most innovative e-health laboratories in the world–without so much as a sign on the lawn.

Over the past decade, using constant feedback from physicians and patients at Stonechurch, Chan, the department of family medicine at McMaster and a team of software programmers and clinicians have pioneered a suite of electronic medical records capable of dozens of tasks ranging from disease surveillance to medication management to clinician reminders to scheduling and even billing. The system–which has not had the benefit of a single promotional dollar–has proven popular with Canadian doctors: It’s now the fastest-growing electronic health record system among scores of products competing for contracts with Canada’s 72,000 physicians.

But unlike competing systems, which typically cost upward of $30,000 per installation, OSCAR is “open source”–the code is non-proprietary–and thus almost free. Installing the system at the Queen Elizabeth Urgent Care Clinic in Vancouver–where 14 doctors are using OSCAR to treat 20,000 registered patients–cost less than $12,000, including printers, a scanner and a laptop. That’s “incredibly cheap,” says Martin Dawes, a doctor in the clinic who also chairs the department of family practice at the University of British Columbia.

Having convinced the clinical community of OSCAR’s merits, Chan recently launched free software for patients; it helps them get access to their records while using the innovations behind OSCAR to better manage their own health problems at home. “That way, a lot of patients won’t even have to come here any more,” Chan says bluntly. “A huge number of physician visits in Canada can be avoided in just the same way as online banking eliminated lineups to see tellers.”

Speaking at an e-health conference in Vancouver last June, Chan suggested that OSCAR’s success may portend massive changes for the Canadian e-health sector. Along with many others at the Vancouver meeting, Chan hinted that software industry heavyweights selling off-the-shelf products to health providers willing to sign proprietary contracts face a rapidly diminishing franchise. Like others who think the future of health information technology will be driven by “creative disruption,” Chan questions the need for massive computer systems such as the $47-million diabetes registry system that CGI Inc. was unable to graft onto Ontario’s hugely complex and disaggregated jumble of health databases.

What’s needed, says Chan, are low-cost, user-friendly health information solutions that reach patients’ bedsides (or better yet, patients’ fingertips) and deliver demonstrable improvements to their health care. Whether they will be provided by traditional technology heavyweights like CGI and Telus, or disruptive innovators like OSCAR, should solely depend on the preferences of patients and their clinicians.

And that, as Helmut Braun and Darren Entwistle would both agree, is an approach Richard Alvarez might finally persuade Canadians to connect with.

 
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