Why Patient Lab Data Should Be Liberated

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.

15 replies »

  1. Let me be the judge of what’s “obscure’. Send me all of my results. Physicians underestimate the ability of the majority of patients to use good common sense and available resources to evaluate their own lab values. It is only a small fraction of individuals who might become “alarmed” about a value close or slighty out of “normal” range. It is high time, values that are dervied from tests about us, are shared without the doctors office being a gate keeper.

  2. I’ll keep this brief by saying that I think that there is a concern for significant increased costs that hasn’t been noted. “Just setting up a computer” for people to access there data is a whole can of worms that has not even been touched. Servers that cost 30,000+ dollars, audit tracking that costs double that to protect the data, and that’s not even getting into the assessment and licensing fees needed to produce such a system.

  3. Looking at “Labs” as a single monolith may no longer make sense, given the complexity; Pathology results may require different review and routing than, say, Microbilology results. In addition, it may be possible to overlay some business rules -based on patient history, familiarity with the test, etc – to auto generate result sharing profile for each lab-patient-physician combination. Add some alert and alarm capability, and you have a solution. Are any VC’s reading this?

  4. Maybe too much lab work is done so there are too many irrelevant tests? And shouldn’t tests be discussed with patients in advance so they know what you’re measuring and therefore can see what’s important? For instance, if you are checking electrolytes because you’re concerned about a potassium level but the chloride level is a bit high and the patient might think that’s the problem, maybe the patient could be told, “I’m checking your potassium – I’d like to see it between 4 and 5. The other numbers may be slightly abnormal but don’t worry about it if I don’t let you know there’s something of concern because those normal ranges aren’t set in stone.” Or something to that effect. You could even say, “If your potassium is 5, this is what we’re concerned about and we can do ___.” I think most patients with chronic conditions either know this stuff already or could get there – making a partner of patients in their care will help them take better care of themselves. At least that’s been my experience.

  5. Nothing I have written conflicts with your view. I never stated that I don’t have ethical responsibilities. People hear what they want to hear even when it is not spoken or written. My patients get results in a few days, with my intrepretation attached. Were they to get their results instantaneously, there would be a noticeable uptick in the messages in my in box, and I feel overwhelmed with what is in my in box already.

  6. “The loss of switching costs”?

    What in the world are you talking about?

  7. Allow me to approach this from a different angle.

    I am not ready to absolve doctors from the responsibility to review lab results in a timely manner, by sending results to the patient directly and calling it a day. The way this should work is the way that it works now in functional practices: results are sent to ordering physician and cc list, and results are posted within a specified time frame to a patient portal, after they have been reviewed, signed off and annotated as needed by the physician.
    You may not have a financial contract with your patient, Dr. Mike, but you do have an ethical contract.
    For all those wishing to invalidate this contract, be careful what you wish for and please remember that the overwhelming majority cannot take over the task of reviewing their own raw lab data. And yes, I know all about the cool new apps that will do that for you for “free”. Those will have no contract with you either, ethical or otherwise.
    Is it not enough that health care works best for the wealthy, do we really need to narrow it down even more so the system only works for the highly educated wealthy?

  8. WTF.

    Just give them the information.

    Don’t just give them you interpretation of it in light of their gealth questions. Charge for your opinion.

    And collect.

  9. I’m willing to leave the contract question alone–it doesn’t really get us anywhere. I actually think the more significant change that would occur is the elimination of the cost of switching providers. If I had copies of my lab tests, I could potentially go anywhere to get them interpreted. No need to follow up with the same doctor. It seems like the loss of that switching cost represents a larger potential financial impact than the additional requests for uncompensated time.

  10. I do not have a contract with my patients. I understand why you would think that I do, but I don’t. You only pay me what your insurance company stipulates, nothing your or I do can change that.
    I never said you shouldn’t get the lab results simultaneously with me, but if you don’t understand them the answer is not to limit the information. Nor is it reasonable to think that I have to explain the inconsequential results to you without you recognizing that I should be compensated for my time. The only why I am compensated is through the mechanisms stipulated in the insurance contract and that means an office visit. Just because you may have better than average understanding does not mean that others do also. If you cannot see how direct results to the patient will result in more requests for uncompensated time from me, then you really understand nothing at all about our current healthcare system.

  11. Dr. Mike, your reasoning is somewhat odd. First, your contract is with me through my insurer. Second, I pay the insurance premium, so I am the one paying for the lab test. Third, the results can be sent to both of us at a negligible difference in cost. When I get the results, I will know you have them as well, and I won’t have to waste my time or your office staff’s time calling up and asking if they’re ready. Why, then, should I not get my results when you get them?

  12. If you are a chronic disease patient and the same labs are drawn all the time, you may not need a doctor to explain it to you. For instance, after two decades as a diabetic, I know the normal ranges of an A1c. I would greatly appreciate being able to see thse test results as soon as they come in. The same is true for lipids and the rest of the standard diabetic lab order.

  13. If I ordered the test, the results should be returned to me first, if you ordered the test, the results can come to you. So go order your own lab tests and then you won’t have to wait for me to get through that mountain of paper on my desk. Not sure your insurer will want to play along as you play doctor though.
    Why would you want to eliminate date from a lab report just because you don’t understand it? That MCHC and RDW are quite useful actually. And there is a reason there exists a renal panel to go along with the creatinine.
    Yes I know I am fitting nicely into the stereotypical physician response on this subject. Part of the problem is that patients don’t understand that I am not on retainer for them. In the good ol’ days the docs cared for their friends and neighbor’s and community, and had a personal and financial interest in each individual. But today I don’t have a contract with you, I have one with your insurer, and together the two of us have pretty much locked you out of the decision process, and you have allowed this to happen. So when you get your “inane” and “obscure” lab values, and you want me to intrepret them for you, make an appointment. Alternatively, you can wait until I get through that mountain of paperwork and hopefully you can read the explanation I write on the copy I send to you in a few days time.