I am admittedly not an expert on health IT, but I am a firm believer in the empowerment of patients to be the driver of her/his health decision making. So this whole discussion about lab data being available directly to the patient is of great interest to me. But it does seem like yet another instance of the two sides coming together not to listen to each other but to be heard by the other side. And as well know, this works so well for any relationship!
Each side’s view is represented roughly thusly:
Patients These are my data and I have the right to access them as soon as they are available.
Doctors We are worried that the sheer volume, complexity and irrelevance of (much) of the data will make it confusing and unnecessarily alarm the patient
Both arguments are valid, of course. But it is important to ask what lurks below the visible portion of each iceberg.
Let’s take the patient view. Why do I want immediate access to my data? Well, obviously, because it is mine, it represents the results of testing on my body, and the record should belong to me. I should be able to access it freely whenever I damned well please. I am also more than a little exasperated with having to wait sometimes days to hear from my doctor’s office about a result that has been available for a while, but was buried under the reams of paperwork on the MD’s desk or his/her assigning a low priority to my data. And I am most exasperated when my lab results get lost or otherwise never make it to me at all. Perhaps if I have direct and unfettered access, this will make thing more efficient for me as an individual.
The doc’s view, on the other hand, is that the patient does not necessarily understand what the notation of “low”connotes in reference to, say, total bilirubin, or how to interpret the RDW data. Even more importantly, what if there is an outrageously abnormal value for some important test? Surely the patient will desire an immediate explanation of it and its implications.
So, clearly, both sides have valid concerns. I do think that those of access predominate, as ethically it just makes sense. But for a non-medical person, looking at a lab sheet is like trying to read information about yourself in Chinese: your success in understanding is largely dependent on your ability to read and understand Chinese.
So, before that horse leaves the barn, we should think through how to execute this most sensibly. For example, perhaps it is not sensible to have the lab computer directly vomit all of the inane values that no one really looks at right to the patient’s account. And backing up a step, perhaps it is time for our lab use to be driven not by the lab equipment packages and processes, but to test only for factors that are of value. If I want to know the patient’s creatinine, maybe the other 6 components of the Chem-7 should not be run, or at least not reported. And obscure values like the ones I mentioned above, e.g., RDW, MCHC, etc., should only be available when the situation actually makes them useful, and not just distracting.
I can see a potential positive unintended consequence of this development as well: maybe clinicians will be less trigger-happy ordering all kinds of labs for all kinds of oblique reasons. Maybe, just maybe, this apprehension about the patient’s access to all the labs will result in more Bayesian thinking in the office and a lot less shot-gunning. Finally, it will not be all patients that choose to access their data. Let us hope that the selection bias does its job and assures that only those who are truly ready to be educated and empowered decide to do so.
All in all, I am looking forward to the liberation of my lab data. What I worry about is all the calls I will be getting from friends and family to help them understand them. All the same, I will do my part for the education and empowerment that absolutely needs to happen for this to be a successful and meaningful change.
Marya Zilberberg, MD, MPH, is a physician health services researcher with a specific interest in healthcare-associated complications and a broad interest in the state of our healthcare system. She is the Founder and President of EviMed Research Group, LLC, a consultancy specializing in epidemiology, health services and outcomes research. She is also a professor of Epidemiology at the University of Massachusetts, Amherst. Dr. Zilberberg blogs at Healthcare, etc.