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Leading Edgeillustration: graham roumieuThe Big IdeaOne Patient, One Record Thereare plenty of compelling reasons forhealth records to go digital. So whyare some doctors resisting?Kevin Leonard, an information systems expert atU of T’s Department of Health Policy, Managementand Evaluation, has suffered from Crohn’sdisease for much of his life. As someone with achronic condition, he has endured not only painfulsymptoms and side-effects of drugs, but also the proliferationof caregivers, each of whom maintains a paper-based medicalrecord documenting his condition. He’s long believed such aninformation system is “cumbersome, slow and costly.”In recent years, Leonard’s advocacy organization, PatientDestiny, has been organizing conferences bringing togetherpatients and health-care providers to promote the “one patient,one record” principle as a means of improving outcomes forthe growing number of individuals with chronic conditions.A single, comprehensive, web-accessible health record, heargues, would allow patients to monitor their own conditionsbetter, prevent emergencies and reduce health spending. Theresult, Leonard predicts, will be “significant cost savings”because patients with chronic conditions consume 70 to 80per cent of health budgets.But while he’s a proponent of digitizing patient recordsand then building electronic networks that can share everythingfrom test results and prescriptions to digital imaging,Leonard felt the vision of Ontario’s eHealth agency was“incomplete,” and driven by the needs of health providers, notpatients. Following a multimillion-dollar contracts scandal ateHealth last year, the agency has done a major rethink, saysLeonard. “That’s a good thing.”Experts have long debated the form, content and functionalityof electronic health records. Should they includegeneric but authoritative health information or email optionsallowing patients to communicate directly with their physicians?What kind of security is required if the record can beaccessed like an online bank account? Comprehensive systemsnow exist in Denmark and inside California’s giantKaiser Permanente health management organization.But Canada’s medical establishment, Leonard says, has longresisted giving patients unfettered access to their health records,even though courts have established that an individual’s recordis not the exclusive property of a hospital or physician. Manydoctors, including former eHealth Ontario advisors, believepatients aren’t “mature enough” to see unedited versions of theirown medical records, Leonard notes.From his perspective, Ontario’s new eHealth administratorsshould begin from the premise that patients have theright to access all the information – tests, digital images, diagnosticoptions − that end up in any new eHealth system. Whenindividuals can go to their own secure portal and check theirlatest test results, participate in online patient support groupsor exchange emails with their physicians, they become lesspassive consumers of medical advice, he says.Leonard points to Sunnybrook Health Centre’s “MyChart”system as an example of what’s possible. The five-year-oldsystem allows Sunnybrook patients to go to their own password-securedonline account from any computer andretrieve information such as clinic visit notes, results of testsdone at Sunnybrook and personal and family health details.They can also request appointments and prescription refillsby email.Sunnybrook chief information officer Sam Marafioti(MSW 1977 St. Michael’s), a guest lecturer in the Faculty ofMedicine, believes that Ontario’s eHealth system will evolvethrough the expansion of local systems, such as MyChart,rather than the construction of a large central network. Hesays eHealth’s role is to develop standards and the backbone,and then facilitate the creation of more MyCharts by local orregional health institutions. “It will only succeed when bottom-upmeets top-down.”Leonard, who has been urging Marafioti to publish dataon how MyChart has affected patient outcomes, agrees. “Thereare not enough competing products,” he says. “We need to domore projects to find out what works and what doesn’t work.”– John Lorincautumn 2010 19