Thursday, January 17, 2013

Redesigning the Blue Button: Mixed feeelings about the Design Challenge so far


Since my clinical work requires me to spend a fair amount of time figuring out an older person's medical history and current plan of medical care -- my spouse recently dubbed me a "meta-doctor" for the elderly -- I've been very interested in the Blue Button redesign challenge. This design competition took place late last fall, and winners were recently announced.

I've just spent some time perusing the gallery of winners. Verdict: very mixed feelings.

There certainly are some thought-provoking ideas to admire, and unsurprisingly for a competition judged in large part by designers (as opposed to by the users i.e. patients, caregivers, and practicing clinicians), the winning entries are aesthetically attractive.

But will these turn into usable personal health information products that can help patients and providers? Unclear. I think it will depend on whether the project organizers will be defining exactly what kind of product they are trying to create, and on how the next steps of the project are implemented. (They are apparently planning to use an open-source process to build a product inspired by these designs.)

Now, let me start by saying that the overarching goal of the project is wonderful and very important. Basically, this design project seems to have started as an effort to help the VA and others produce a more appealing and usable personal health record, also known as the Blue Button output. (You can see what the output currently looks like here.) Obviously the Blue Button was a good idea in sore need of an upgrade; the VA and others deserve kudos for participating in this redesign effort.

Where I start to get confused, however, is in understanding exactly what the goal of the design project currently is. I've only looked at a few projects in detail, but few of them seem content to just present the Blue Button output in a more congenial and modern way.

Instead, many entries propose nothing less than a full-scale reimagining of how a person might dynamically interact with their medical information (and presumably with their clinicians, although so far I've come across very little in the galleries that specifies how these designs will help me help patients). So we have entries that propose things like the calculation of a global health score ("derived from key body, emotional and lifestyle factors") and condition views which gather up all visits, medications, and results related to a condition (this idea I really like, but we aren't yet tagging data in this way in the EMRs, which would seem to be a prerequisite).

All this thinking outside the box is laudable. Believe me, I like it, and would like nothing better than to tear apart the way we currently organize health information and (barely) share it with patients, and then rebuild it from scratch.

However, in terms of developing a feasible and usable solution to a practical problem, this feels like pretty significant mission creep. It's true that a downloadable patient health record offers exciting possibilities for engaging patients in the management of their health. But developing that kind of sophisticated personal health record is a big big project. Furthermore, I thought the job at hand was to take the existing output from the VA and other big health providers, and make it more attractive and usable for patients and clinicians. Let's not forget, after all, that the VA's original intent for the Blue Button was to give veterans a way to share their essential VA medical information with non-VA providers. This is a crucial problem to solve, while we wait for health information exchange to finally become widely available and operable.

To be fair to those 230 individuals and companies who submitted entries, the design objectives as specified by the Challenge organizers left a lot of room for interpretation:
  1. Improve the visual layout and style of the information from the medical record
  2. Create a human-centered design that makes it easier for patient to manage their health
  3. Enable health professionals to more effectively understand and use patients' health information
  4. Help family members and friends care for their loved ones.
The competitors were also instructed to use incorporate the sections and fields incorporated in a Continuity of Care Document

The judging criteria were as follows:
  • Overall Appeal: How does the entry feel visually?
  • Patient Usefulness: Does it address the needs of a patient?
  • Caregiver Usefulness: Does it ease the responsibilities of a caregiver?
  • Physician Usefulness: Can a physician integrate it into their workflow?
  • Visual Hierarchy: Can the most important information be easily found?
  • Information Density: Is it easy to digest the information that is presented?
  • Accessibility: Can a varied population make use of this document?

Again, lots of room for interpretation here. I also found myself wondering how the designers were supposed to know the answers to these questions. How much do they know about the needs of patients, or the responsibilities of caregivers? (Come to think of it, did the judging panel include adequate representation from patients and caregivers with at least moderate health care needs?) Who decides what the most important information is? For instance, I doubt that either patients or clinicians really need to see immunizations early on, and it is genuinely weird to see a past pregnancy listed above diabetes on a problem list.

And which physician said that their primary need is for a patient information document to integrate into the workflow? I would've said first that I need it to quickly summarize the patient's past medical history, and current plan of medical care, so that I can figure out how to help the patient. (This is something that a good old-fashioned dictated hospital discharge summary does well, and that a computer generated continuity of care document does poorly.)

Were these designers were able to interview users before designing? As far as I can tell this challenge was announced in early November and entries were due by December 1st, so it seems that the design teams couldn't have had much time to study users in real life. And if they did study users, did they study older people with multiple medical problems? The test of good design will be whether it stands up to these kinds of "heavy users."

Now about the winners. Trying to make sense of them is overwhelming. (I'm still scratching my head wondering how the judges worked their way through 230 entries in four weeks.) There are three ranked winners for each of the following categories:
  • Best overall design
  • Best medication design
  • Best problem/medical history
  • Best lab summaries
(Plus another 22 entries that "inspired the judges")

I quickly realized that looking over more than 1-2 of these in any depth was out of the question (I do have a day job after all), but I'll share a few thoughts.

First of all, many of the entries are based on Ellen Ross, an Asian American woman born in 1960 who takes Tylenol #3 and Indomethacin, and has two items on her problem list. I was a little perplexed by this, until I realized that this was the data provided in the sample Blue Button output.

Bummer. These designs would undoubtedly be much more robust if the organizers had offered the example of a more typical medically intensive VA patient, with ten chronic problems, twelve medications, and twenty encounters over the past two years.

(Note: the winning entry for best overall design moved Ellen's DOB back to 1940 - yay- and put her Lipitor, Klonopin, meclizine, and naproxyn - argh. Something patients really need is to know when they've been prescribed meds on the Beer's list!)

In fact, evaluating the entries would've been much easier if the organizers had specified a standard complex patient to be used as a model, and had also requested some standard deliverables from the designers. It would've been nice to see each designer's prototype for the printout and digital version of their proposed patient information record.

And what about a printout that could be given to clinicians? To my surprise, I didn't come across any entries that provided a clinician version of the printed information. This struck me as odd, since I envision patients bringing their printout when they have to go to the emergency room, or if they go see another doctor. Surely the generation of a more compact clinician-oriented print-out of the patient's information would be made possible by software. (More importantly, information presented in an unfamiliar and lengthy format is more likely to get ignored by busy docs, so I think there's real value in designing an output version meant to be read by clinicians.)

Next steps and suggestions

According to this website maintained by the challenge organizers, in the next 2 months, a combination of the winning designs will be built via an open-source process. This strikes me as a pretty ambitious timeline but I look forward to seeing the product.

What exactly will they be building? Specifically, are they indeed going to go for the grand reimagining of the patient health record? (Or better yet, collaborative health record, which is a term I recently came across on Twitter.) Or will they instead focus on a nicer looking output for the VA? Would be nice for them to spell this out more, as inquiring minds want to know.

And will they do any user-testing to refine these designs, before starting to build? They have generated lots of promising ideas, but it would be nice to see the winners confirm that their prototypes are more suited to complex patients, before starting to build based on those designs. For instance, they could ask the winning designers to resubmit the prototypes based on a standardized patient with multiple chronic diseases (like the one I wrote about here). I also hope they'll run their best designs past a focus group of older patients and caregivers, as well as past practicing practicing clinicians who routinely review comprehensive medical histories for patients who are new to them (i.e. ED docs and PCPs).

Summing it up

This Health Design challenge has spurred designers to come up with fresh ideas for a patient health record, including some reimaginings of how patients might interact with their data. I applaud the spirit of this design competition, but am wondering whether this will in fact lead to a workable solution to an important problem: turning the VA's Blue Button output into something more readable and useful for patients and clinicians.

These designs would feel more convincing if we could see them applied to much more complicated patient histories. It's too bad that the challenge organizers didn't provide one complex standard patient for all designers to solve for. It's also not clear to me that the designers were able to get a lot of input from patients (especially older complex ones, i.e. the ones who use the most healthcare), caregivers, and clinicians, and it would be nice for the top designs to be focus-grouped before the project organizers move on to building a product. Last but not least, I'd like to see these designs produce a separate printout organized for the needs of clinicians, and hope this capacity will be part of the finished product.

Use the users!


Addendum 1/18/13: Wondering if your Blue Button redesign can handle medically complex patients? See the follow-up post here.

3 comments:

  1. As is most often the case Leslie, your in the trenches provider experience and patient prioritized viewpoint rings true. I too was amazed at the lightening speed of the design and judging process..what is the rush? Is the point to get good working stuff out there or a headline? I am overwhelmed with contests and underwhelmed with substance.

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  2. Leslie: One thing I noticed about this competition, that the file that is provided is the VA's current BB format, which is an ASCII text document. Did the designs pull the data from this text file for display?

    If so, this is a bit of a wasted effort, because Project BlueButton is slated to abandon the current human readable format, for an XML variety. Not just any XML, but a particularly messy and complicated variety called CCDA (which is a draft standard by HL7). When a designer is given this CCDA XML and told to display it in a "pretty" way, it will be painful.

    Alan Viars

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  3. Alan, interesting question. I don't know the answer but you could ask @ProjectBluBtn, or perhaps the organizers of the Health Design Challenge.

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