Give control of electronic health records back to patients
I say that because everywhere you look, there is a tension between what patients want, what technology permits, and what present conventions — legal and otherwise — say people are allowed to do with their health records.
Start a discussion with Kevin Leonard, a University of Toronto professor who has been researching electronic health records for more than a decade, and his own frustrations come gushing out. Having had Crohn's disease for 40 years has turned Leonard into a walking medical dossier. He now shows up at his doctors' offices with a sheet full of lists: the 20 doctors and specialists he consults; the 13 medications he takes; the bad drug interactions he has experienced.
But if he wants to view electronically his entire record, his most recent blood tests, his latest MRI, he can't see them.
Why not, I ask?
"Why not?" he exclaims back. "I'd love you to write about that. Why can't I access my electronic record? … They [the hospital staff] say I don't have authority to access my electronic file."
A different kind of personal/political tension arose when Sarina Cheng, who is spearheading the development of the personal health record called MyChart at Sunnybrook Hospital in Toronto, talks about what she went through when her father's Alzheimer's condition required her to accompany him when he visited doctors. Every time they saw a new doctor, the pair was asked to repeat again what was already in the medical records.
"Asking an Alzheimer's patient to recall the last two weeks of their lives — I couldn't believe it," she says. "And when I would respond that it was already in the record … they would say 'I don't have time to look it up.'"
Donna Hammill-Chalk, Sunnybrook's designated patient spokesman for MyChart, was a vice-president of sales and marketing for oncology for a large pharmaceutical company before she came down with breast cancer. Then, she says, "I became a patient."
As a patient, however — even with a MyChart file — she is not permitted to see her test results before a doctor has looked at them. "They feel some patients can't handle it [the results]," she says, and then switches into a Jack Nicholson, A Few Good Men voice. "They can't handle the truth."
She says that approach does more harm than good for people like her. "For someone like me, not knowing creates more anxiety than knowing."
So why haven't Canadian patients taken to the streets demanding unlimited access to their own EPHRs?
"Lots of people don't know [an EPHR] is not available. They don't know they don't already have an electronic health record," says Alex Jadad, head of the Toronto Centre for Global eHealth Innovation at the University of Toronto.
Then there is the issue of what might be termed the Healthy Patient Paradox. Leonard and others have done studies about who really wants and needs today's system to change from a print to an electronic health record. At the top of the list are the roughly one-third of people who are chronically ill — individuals Leonard and others have named Consumers With Chronic Conditions (CCCs).
The rest of the population are either people with a condition that will fix itself over time — think a broken leg — or who are just plain healthy. To people who yearly go to the doctor's office, have a check up, are told they are fine and "see next year," personal health records have a significance roughly equal to junk mail flyers coming down their mail slots.
"They think they are immortal," says Jadad about part of the reason PHRs aren't on their radar.
And even among the chronically ill, Leonard says only about a third — 10 per cent of the Canadian population — are computer savvy enough to be able to access their electronic records and likely young enough to believe that personal health records are going to make a big difference in their lives.
So we find ourselves in this paradox. In order to serve the maybe 10 per cent of people who really want electronic patient records today, Canada still would have to computerize the entire system.
And before that, there is the sinkhole into which fall any complaints about the situation.
"For a patient's voice to be heard, who should they go to, to complain about things?" Jadad says to me.
A family doctor? A hospital. All hospitals in their city? A province? Ottawa? Everyone seems to have taken some responsibility for ensuring health records become digitalized, and yet nobody seems specifically in charge of making sure it happens for patients.
Jadad points out with more than a little irony that places where some kind of electronic patient records are today readily available — much of western Europe, for example — nobody asked patients whether they wanted them or not. The government just created them.
Lack of communication
So what is going to happen in Canada?
Optimists say adaptation is just a question of time. Personal health charts are beginning to appear in a readable, usable form. In a bit more than three years, MyChart at Sunnybrook has grown to number 5,000 users. More widely Microsoft's HealthVault and Google's Google Health allow people to create their own electronic personal health record free of charge. However, there is no automatic link to test results and doctor's records — the patient has to enter all their information themselves.
"I have stopped referring to someone who uses our system as 'the patient,'" Cheng tells me. "Rather, I refer to them as the 'health consumer' … because when I refer to myself as a patient, I feel as if I belong to somewhere. Belong to Sunnybrook. Belong to St. Joseph's. When I say I am a health consumer, I am just talking about myself."
Patients' redefinition of themselves will only mean something if doctors and hospitals understand that health consumerism means information power has shifted and that the record fundamentally belongs to the patient, because he or she is the record. I point out to Cheng that last year my daughter Anna was a cancer patient at Sunnybrook. She ended up walking around with a notebook of information she had collected, creating her own personal health record and getting photocopies of documents, because nobody at the hospital told her that her records were on MyChart.
"Is there a protocol which requires doctors to tell patients that MyChart exists?" I ask Cheng. There are notices in waiting rooms, she says, but no, there is nothing that demands a doctor or nurse tell a patient about MyChart.
Sigh. It's like a bank putting ATM machines where their clients have to struggle to see or use them. And if EPHRs are to be something more than a novelty I think this pervasive doctors-and-hospitals-know-best-what-you-should-be-told paradigm has to change. But what would be the mechanism for change? Leonard is promoting something called Patient Destiny, which is holding yearly forums entitled One Patient, One Record. Last year it encouraged patients en masse to take a "storm the Bastille approach" to getting PHRs. There also is the Canadian Association for People-Centred Health with a central tenet: "People own their personal health information."
Both interesting, but with Jadad's arguments in mind, they aren't "system-transformative." System transformative is what happened in New Brunswick in the 1980s when Margaret MacDonald sued her doctor, Elizabeth McInerney. MacDonald had been advised by McInerney to stop taking previously prescribed thyroid medication. MacDonald became concerned about the rationale behind previous treatments and wanted to see her complete medical file. McInerney was willing to give MacDonald what she had written, but felt any record which other doctors had created was their property and MacDonald would have to ask them for permission to see these documents.
In 1992 the Supreme Court of Canada ruled that indeed MacDonald could look at all her records — but with one huge caveat. "The patient is not entitled to the records themselves. The physical medical records of the patient belong to the physician," wrote the court.
"The physician must have continued access to the records to provide proper diagnosis and treatment. Such access will be disrupted if the patient is able to remove the records from the premises."
The doctrine of doctor ownership is the implicit intellectual and legal basis for a medical system keeping Canadians away from their records today. It makes no sense. In 2010 electronic records can be effortlessly shifted around, and that means there is no logical reason why every Canadian shouldn't have access to everything and anything in their medical records wherever and whenever they want. The internet has overthrown the doctor's ownership of health record rationale.
And as soon as some angry and disputatious patient or patients realizes this, we can expect a lawsuit demanding full and unimpeded access to all electronic medical records — a suit based on that very modern legal principle: "When technology changes, the law must change."