If everyone agrees, then why can’t I see my record?

In late May of this year, a large percentage of the health and medical informatics community in Canada met in Quebec City for the 2007 eHealth Conference. One regular feature of this annual conference is the Great Debate. This year the debate centered on the question “should patients have unfettered access to their health information?” I was very fortunate to be invited to be one of the debaters – on the pro side.

Before the debate even took place, the audience, of about 800 attendees, were asked whether they agreed or disagreed with the debate question. It was estimated at the time that approximately 90-95 percent of the delegates responded in favour – yes, patients should have access to their health information! And this was before the debate even started.

If so many people agree, then why can’t I see my record today? What is the hold-up? What is stopping us from moving ahead in a direction where there is overwhelming support – and this support is coming from healthcare professionals?

These are great questions that have been asked before, and we know that the answers are not that straight-forward. One major reason is seemingly banal, but overpowering: our delivery system has not accepted the idea of patient access to their own medical records.

I know, how can this be? Is this not in direct contradiction to what was stated in the preceding paragraphs? Well, yes and no.

In the abstract, yes it makes perfect sense that patients should have full access to all of their health information. In an era where consumers are becoming more involved in most every other aspects of their lives, it is reasonable to assume that the same consumers would want the same powers and freedom while managing their healthcare.

However, dealing with one patient at a time, considering the very nature of the contents of a PHR (patient or personal health record), addressing issues surrounding relevancy and privacy, the acceptance of full patient access is not as readily forthcoming. More specifically, the resistance is not, for the most part, technology-based but rather driven by a health system infrastructure and culture that cannot change… at least the way it is structured today. In other words, the system will not change until a number of issues are addressed. Below, I outline three.

First, the healthcare culture, certainly when it comes to dealing with patients, has been operating for generations with a paternalistic view. The consensus is that most patients cannot be trusted to manage their own care.

To some degree, this perspective is warranted. Further, some patients appear to even go out of their way to provide evidence in order to support this thinking. Smoking is one obvious case where there is widespread poor health management by patients.

However, it must be emphasized that this is not the case for all patients. There are many patients with chronic illness who truly want to be more actively involved and empowered. I know that, as a patient, I want to know all the facts no matter how tough they may be to deal with; sometimes understanding the situation does indeed make it easier to accept.

Second, the reimbursement structure within the Canadian healthcare system does not motivate doctors (certainly not general practitioners) to provide medical records access to their patients. While doctors most assuredly want their patients to be informed, so as to improve their health outcomes, in the end, there really is no reason to spend much time or effort, not to mention funds, to provide this access.

In fact, one could argue, that the system today actually promotes and reinforces an environment of face-to-face, one-to-one, healthcare information delivery (as opposed to electronic communication) by creating a simple payment formula – fee for service (i.e., see a patient, submit a claim).

If patients get access to information through electronic means, there will be fewer patient visits – no ifs, ands or buts! That is one of the major benefits of IT – fewer visits, lower costs overall. While it is true that the benefits of eHealth go well beyond the financial (i.e., patient safety, increased efficiencies), this is still an important consideration that needs to be addressed. In the end, what would motivate a clinician to earn less money?

Third, it is not yet an accepted fact that patients having access to their own health information improves their health outcomes. The research is still going on “in the labs”, but each month there is more and more evidence demonstrating that the empowered patient is healthier.

So, where does that leave us? It would appear that no matter how much IT development has taken place, or how much system interoperability is created or informatics training is done, I won’t get to see my record until:

1. The overall system appreciates the role of the patient as an individual and as a key stakeholder who must become active in healthcare system management.

2. The financial framework begins to motivate clinicians to support patients’ migration to feasible access of their own health information.

3. More research is funded to prove the hypothesis that informed patients are healthier.

By Kevin Leonard, PhD (as published in Canadian Healthcare Technology Magazine, Nov. 2007)

Kevin Leonard, MBA, PhD, CMA, is an Associate Professor, Faculty of Medicine, University of Toronto.