For a variety of reasons my wife recently had a full panel of PFTs (spiro+BD, lung volumes, DLCO) at a different hospital than the one I work at. I went with her and was pleased to see the technician perform the tests pleasantly, competently and thoroughly. I was able to glance at the results as the testing proceeded so I had a fairly good idea what the overall picture looked like by the time she was done.

The difficulty came later when my wife asked me to print out her results so we could go over them together. Many hospitals and medical centers have websites that let patients email their doctor, review their appointments and access their medical test results. They go by a variety of names such as MyChart, MyHealth, Patient Gateway, PatientSite, PatientConnect etc., etc. My hospital first implemented something like this over a dozen years ago so I had thought that by now they were fairly universal but conversations with a couple of friends from around the country have let me know that this isn’t really the case.

Regardless of this, the hospital where my wife had her PFTs does have a website for patients and her PFT results showed up about a week later. When I went to look at them however, I was completely taken aback. Not because the results were wrong but because they were presented in a way that made them incredibly difficult to read and understand.

Here’s the report (and yes, this is exactly what it looked like on the patient website):

If you were able to follow this report then I commend you. But now put yourself in the shoes of a patient that is also trying to make some sense of their test results. Personally, I’d say the odds of any patient being able to understand this report are pretty slim. There’s so much wrong with the way this report is structured it’s difficult to know where to start.

I think the first thing that makes it hard to read is that there is no separation of the results between different tests so unless you’re knowledgeable you wouldn’t know where the results for the spirometry, lung volume and DLCO tests started or ended. For that matter, it’s hard to say that they’re correctly grouped in the first place since the FEV1/FVC ratio and RV/TLC ratio are placed just after the DLCO results.

The second is that the values for the pre-bronchodilator, post-bronchodilator, predicted, percent predicted and percent change are separated on the report and are not at all easy to compare. On the website they all tend to fall on different pages and no matter how you scroll you can’t see more than part of each of these categories.

Third, there are an awful lot of extraneous values. When was the last time you saw FEF200-1200, FEV0.5, FEV2, PIF, FI CH4 and FE CO (among many others) on a report?

Fourth, and in some ways worst of all, there are results that are mis-labeled or at least labeled in non-standard ways. DLCO/VA is (probably) DLCO. BHT should be Breath Holding Time but the value reported for it was 0.08 and it should really be something like 10-12. IVC should be the DLCO Inspired Volume (at least it should be since it’s embedded in the DLCO results) but the value reported for it was 13.77 and the FVC and VC were 2.11 so what is it really?. FI CH4 is 1.89 but the FE CH4 is 3.00 and this is the opposite of what they should be. Ditto FI CO and FE CO. The results for Krogh’s K were 5.05 but the DLCO is 14.52 and VA is 4.37 so it should really be 3.32 (and why was the VA [4.37] larger than the TLC [3.48] so is it really correct?). I can guess but I’m not totally sure what stdFEF-25-75 is (probably not isoFEF25-75) and I have absolutely no idea what PEFT, VE, CO T.C., LCI or VC(SBO2) are.

Note: I’m also not certain where the values in the standard range come from. I know the lab uses the NHANESIII reference equations for spirometry and the standard range in this report is not the NHANESIII LLN and ULN.

Finally, and most importantly of all, where’s the interpretation?

So, the report that’s made available to patients is extraordinarily hard to read with mis-labeled results, no interpretation and is therefore pretty much useless. How in the world did it end up this way?

I actually had a conversation with the medical director of the lab about this and was told that they had tried very hard to get this fixed but it was more or less the default setting in their hospital’s information system (a commercial system found in many hospitals) and that the hospital’s IT department did not consider fixing this to be any kind of a priority whatsoever.

The problem therefore, starts with choices made by the vendor of the hospital information system. There is likely some ability to change and customize the settings but rightly or wrongly the keys to this are held by the IT department and the reality is that within any hospital, just like the capital budget and room space, IT is a limited resource. Pulmonary function labs are a niche specialty and even in the largest hospitals they are small and have limited clout. IT resources are deployed based on perceived need and pulmonary function labs have to compete for them against significantly larger departments that probably contribute exponentially more to the hospital’s bottom line.

If I was asked what I’d do to try to fix this I’d say that it’s important to be as specific as possible with any request to IT so my first step would be to request the documentation relating to customizing the patient website reports. After determining what is and what is not possible (for example I’d prefer to have the results in a more-or-less standard table but this function may not be supported) I’d create a very specific list of changes.

Next, in order to get the request back on IT’s radar I’d label it first as a patient safety issue with possible legal implications (because of the mis-labeled results). I’d also label it as a patient healthcare management issue (improving patient outcomes and reducing re-admissions). Finally, I’d also label it as a patient marketing problem and then re-submit the issue to IT and the hospital administration.

Even so, no matter what arguments you can muster it may well be possible that the hospital’s IT department is already running around putting out fires as fast as it can and truly does not have the resources to fix this problem. That doesn’t mean you can’t get your ducks in a row and be persistent. It also doesn’t mean you can’t think about alternate (and hopefully temporary) solutions such as printing a preliminary copy of the patient’s report and handing it to them as a visit summary before they leave the lab.

Before I ran into this problem I didn’t know just how spoiled I was. For at least the last 10 years my lab’s patients have been able to read and download PDF copies of the same reports we send the physicians and these include the results, graphs, trends and interpretation. I always thought this was a fairly straightforward solution and never thought it was that much of a problem to implement. I’ve had my battles with IT (starting when we got our first network and hospital computer system interface in the early 1990’s) but eventually the lab always got some kind of functional solution. In retrospect, it’s apparent that I had it easy.

For decades after I started in this field nobody but the pulmonary physicians cared what was on our reports and what they looked like. Now we’re completely dependent on the hospital’s IT department to manage both our data and our reports. They in turn are often looking to other departments like Medical Records, Budgeting and Compliance for guidance and we have less say than ever in what our reports look like, how they are managed and what kind of priority our problems have.

But also for decades the best a patient could do to manage their results was to get permission to photocopy their reports and then hand-collate them (and we’d also look somewhat askance at those patients as being self-absorbed and possible hypochondriacs). Now it’s widely accepted that patients need to be partners in their own health care and for this reason they also need to have access to all their clinical information. Many (but not all) hospitals and medical centers now have websites that make this clinical information readily available to their patients and like it or not, it’s another area that needs to work for our patients and for that reason is now another one of our responsibilities.

PFT Blog by Richard Johnston is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License