Going to a doctor's office often seems like a ramble down memory's windy, overgrown cow path. They want you to recite your whole life in sickness and in health, and that's hard because you so easily forget your diseased past.
For example, I recently visited an ear specialist and had to fill out a form about my medical history. When asked about any ear surgery I recalled with a jolt that yes, indeed, I had had such surgery — when I was two.
The doctor took a look into the cut-up ear and then pointed out to the intern who was with him that the surgery had narrowed my eardrum. Did the intern want to take a look at that? He did.
Health records explained
What is the difference between an electronic medical record (EMR), an electronic health record (EHR) and a personal health record (PHR)?
Nobody is sure as they are all often used interchangeably. However, there is a tendency for an electronic health record to describe the electronic records generated within an institution, while electronic medical records describe all records regardless of where they are generated.
There is another tendency to use the term electronic medical record to describe something that doctors and health-care providers have access to, and an electronic health record as something both doctors and patients can sign into.
PHRs have been called in several recently published papers "an individual's electronic record of health-related information that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared and controlled by the individual."
Again it sounds like the sort of thing that electronic medical and health records are trying to capture, but with the question of information ownership again being at issue.
But nobody asked if I wanted to see inside my ear to see what my aural insides looked like. It was, as so often the case with physicians, a situation in which you felt as if your body wasn't really yours. Rather it was theirs — the hospital, the doctor, the technicians who drew blood out of you, even the machines that imaged you seemed to have more ownership over your body than you did.
But all this might be changing as we move to what are variously called electronic medical records and electronic health records.
Simple concept, complex execution
The concept is simple. All medical records, including doctors' and nurses' notes, tests, images, surgeries, hospital visits, prescriptions, genetic profiles and maybe your own record of symptoms and complaints, will be recorded and retrievable in an electronic format.
That information will follow you throughout your life. Everywhere. It will be accessible when you visit a health specialist in Timmins or in Timbuktu. It will provide the basis of future diagnoses for conditions.
It will also provide in a larger sense something the medical system sorely needs: quick, efficient, post-clinical trials. What actually happened to a drug or procedure when it was used not by just the limited number of patients in a clinical trial but by the whole population? Were there unintended side effects, both beneficial and harmful? Were the results worth the cost?
But beyond everything, the record will be yours. You will own it. You will have effortless access to it. You will be able to approach the next doctor you see and announce, "Take a look at this that happened to me. What do you think of that?"
Nobody will have seen images of your narrowed ear canal without you having had a chance to see it too.
When will we get them?
It sounds like we're on the brink of a new nirvana for medicine.
Well, almost. The doubt comes because of a fundamental question: Why aren't electronic medical/electronic health records (see discussion of the difference in the sidebar) here already?
Why do the most recent figures suggest that to date, 5 per cent of people in Canada have fully electronic health files?
In every other profession — lawyers, engineers, architects, bankers, writers — stuck a toe into the waters of electronic record keeping, realized the benefits and almost instantaneously jumped in with both feet.
Only when it comes to doctors, at least doctors in North America, it feels as if we are stuck in a future that never comes. As former U.S. president George W. Bush tartly opined in 2006, "doctors practice 21st century medicine, [while] they still have 19th century filing systems."
The reason we're stuck on the road to medical information nirvana is not one thing but a concatenation of many things. Address problems in one area and you create problems in others.
Consider the following contradictions that may not be obvious to the average patient:
(1) Errors may increase in an electronic universe.
"We have seen interns copy resident notes, consultants copy admission notes from the primary intern, and interns who are beginning a new service copy the previous intern's notes," wrote two doctors in a recent editorial in the American Journal of Medicine entitled Copy and Paste, A Remedial Hazard of Electronic Health Records. "With each iteration, notes lengthen and errors accumulate."
(2) Treatments may not become more efficacious.
A 2008 study of 2,969 acute care hospitals in the United States, which was published in the journal Medical Care Research and Review, indicated that when one used electronic medical records, there wasn't a uniform improvement in treatment standards. There was a significantly better outcome for patients with various heart conditions in emergency wards, but if you arrived with pneumonia - watch out. The use of electronic medical records meant that patients in the study group were less likely to get the lifesaving antibiotics in the four-hour timeframe they really needed them.
"For this reason, there is limited support for the hypothesis that hospitals with EMRs provide higher quality care in all areas," wrote the authors in that kind of furiously understated voice that medical papers often use.
(3) The question of ownership of the records remains profoundly conflicted.
"Who will have the ability to make or alter an entry? Are we each about to become holders of our own somatic Wikipedia? What about retention of copies?" asked an editorial in the Canadian Medical Association Journal.
Even more troubling, could a patient go into their electronic record and alter information? No, says Dr. Ken Flegel, CMAJ senior associate editor, who wrote the editorial. "Although there might be a place for him or her to add comments."
But what kind of comments? And where?
(4) It may not be more time efficient.
A 2005 review of previous studies published in the Journal of the American Informatics Association by a group of Canadian researchers found that using bedside or point-of-care electronic data systems in hospitals increased the time physicians spent on documentation by 17.5 per cent. This jumped to from 98 per cent to a whopping 328 per cent increase in a physician's record keeping time when a centralized workstation was used.
In 2006 a medical student at Indiana University put a workweek face on this. He compared an EMR hospital to a paper-based hospital in Indianapolis and showed the EMR system increased a doctor's workload by 4.6 hours — roughly half a day a week. The obvious question for the health care system is: Who pays for that?
(5) Standardization is difficult if one is changing an entire system.
There are an estimated 1,000 companies providing various aspects of an electronic medical record system. Lawyers and architects can go to any one of many providers and choose the system best for them, but how does that work if you are building an entire national/international network that has to tie together and share records seamlessly among various health-care providers?
By my count there are 570 diseases, conditions, syndromes and so on that start with the letter A alone. And the acronyms and abbreviations that describe them are equally vast. The letters AA, for example, are used by doctors to denote active avoidance, acupuncture analgesia, acute appendicitis, adenine arabinoside, adenylic acid, adjuvant arthritis and adrenal androgen.
This ultimately translates into a world in which Dorland's Illustrated Medical Dictionary in its latest incarnation had 2,208 pages. Not to mention that in Canada it has been estimated that there are 100 million physician exams, half a billion lab and radiology tests, and 382 million prescriptions yearly.
(6) And then there are computer security issues.
Developers now realize the virtues and perils of storing information electronically are almost identical - think ease of access, think ease of reading. This was highlighted last week when Alberta announced 11,582 medical files had been infiltrated by a virus that subsequently transmitted information to an external computer. You would have needed a semi-trailor to remove them physically and a mass of people combing through these records for months to make any sense of their data. Today all you need is a smart hacker, a vulnerable computer system, and suddenly your patient record can become a public record.
Sober second thought
Some would say that when it comes to electronic medical records, we haven't moved too slow but too fast.
Dominic Covvey, a professor at the University of Waterloo, Ont., and founding director of the Waterloo Institute for Health Informatics Research, has likened the present process to "building from the second storey down."
"We have never debated thoroughly the assumption that a single pan-Ontario (or pan-Canadian) EHR is feasible and/or advisable," says Israel Aharoni, a Toronto-based computer scientist who has advised hospitals and health care analysts on information systems for more than 25 years. "The politicians and the consulting community love mega projects. But in IT/IM circles we call it 'Mega Projects equal Mega Flops.'"
I think Aharoni's view is likely too harsh, but his pessimism speaks to something quite profound. We — the non-information techie, non-doctor, non-health administration professional — have to try to see much more clearly the lay of the electronic medical record land. We have to understand how extremely complex the process of moving from print to electronic record keeping has been and is going to be.
And so what I will be doing over the next while in this column is laying out electronic health record issues and attempts at solutions in various sectors. Here are patients' hopes and concerns. Here are doctors' hopes and concerns. Here are the same for technology companies. Here is where the health-care system as a whole stands.
What I hope to do as well is use some of the virtues of online journalism to show you issues. I want you to look at records from the perspective of the various communities that have to use them. I want you to literally see the conflicts and not just read my words describing them.
In the end, I will talk about whether we actually do see a way ahead in a universe where Canada Health Infoway, the federal agency charged with bringing electronic medical records to all Canadians, estimates it's going to be a $10- to $12-billion process.
I want to do all of this within the context of what I have described in previous columns as the new positioning of science/medical journalism in an internet universe. At least some of your responses will be a jumping off point to go deeper into certain questions.
The rationale for the series will not be entirely what I think, but what you, upon reading/seeing some of the things I write, think you want to know. Cogito ergo sum should become the law of our times for both writers and readers (not to mention in relation to my introduction: Cogito ergo sum "my ear").