Chapter 10: Dear Doctor

Chapter 10: Dear Doctor

You know what phrase I heard a lot in my hospital stays? Patient-centered. It was expressed as the idea that care was focused on the whole patient, not just their disease. More than that, the patient was part of the team working towards the ultimate goal of being healthy. In my field of library and information science we have a very similar approach called “user-centered.” It is the idea that the person using a system ultimately determines the value of that system, and so the system should be designed form a “user perspective.”

This was not always the case. Today you use Google without thinking about it. If you walk into a medical library, or did so as a student, you can search PubMed and other databases for articles. Today we take the idea of search for granted. Yet in the late 60s and early 70s searching for articles was hard. Computers were large, slow and unfriendly. So when a group of folks set out to use computers to look up articles, books and such, they did what any normal person would do: they started with what a computer was good at.

These groups of researchers, students, and engineers that would come to be known as information scientists used the Systems Approach. That is, determine how it is easiest for a computer to do the task set forth then train specialized operators to translate real people’s needs into what the computer can handle. Those specialized operators? Librarians.

So if you wanted to find articles about Hodgkin’s Lymphoma but not any other type of lymphoma, you would go to a librarian, tell him or her what you were looking for, and they would translate that into a specialized query (normally a Boolean query if you care about such things). The librarian was necessary not only because the search engine was hard to use, but it was also very costly, and a good query saves time (and therefore money).

As computers became more capable and eventually evolved into the desktop, system designers wanted to do away with the intermediary and the concept of the user was born. How could systems be made to operate with relative novices at the helm? What did users find valuable? For example, users, it turns out, responded to things like how the system looked, not just how it worked. Users want articles organized by how closely articles match their query (we call it relevance), not just alphabetically. And thus the Systems Approach was replaced with the User Approach, or simply, systems strived to be user-centered.

Suddenly in technology companies programmers were joined by anthropologists and sociologists that would tease user preferences out. New fields like Human Computer Interaction or HCI were born. HCI researchers would have users wear special eye tracking glasses so the researchers could see what users looked at and try to glean why.

For example, when Google first launched it would give you your search results in a column on the left, and relevant advertising in a narrower column on the right. Go search Google and look what’s on the right now…probably not advertising (ads are now mixed in with the results). Why? Because HCI researchers noted that within about three uses of Google NO ONE looked at the right-hand column.

Those MRI results you look at? You view them through an interface that was developed through these techniques. Those clunky medical records system you love so much? Believe it or not, they had a user experience engineer (or some such wacky title) design all those tabs and the color of the buttons. And therein lies the potential downfall of the user-centered experience, and likely the Achilles’ heel of patient-centered care.

You see, if I were designing a system just for you, and I was user-centered, the system would function and look exactly how you would expect. However, few systems are customized to one individual. The user-based approach looks for aggregate users, or user types (often called “personas”). So developers would test a bunch of doctors. Then they would try to meld all of these responses into a usable interface for those doctors. You know, because all doctors are exactly the same (note sarcasm here).

The user-based approach is ultimately flawed because either designers look at a bunch of users until they find one they already agree with, or they pretend that all members of a given group want the same thing. Ultimately the downfall with “user-based” is that it studies real users, but gives them little power to actually customize a system for individual needs. The user has little to no power.

Now take patient-centered practice. According to the literature, you are supposed to talk to the patient. You are supposed to let the patient ask questions and you try to answer them. Easy enough. Yet you are also supposed to include patients in the actual decision making process, and let’s be honest, that is a potential nightmare. Who is this person to make medical decisions? Even the idea of informed consent can be seen as a bit ridiculous. It’s a bit like the “why” game toddlers play.

“David, you have cancer.”


“One of the cells in your immune system mutated and began to divide uncontrollably.”


“We don’t know of one reason. It may be environmental, it may be partially genetic. We haven’t identified one cause.”


“Well, it is a complex task doing research on the human body. There are enormous complexities and interacting systems.”


“Well, primarily it is a result of evolution. As life forms evolved on earth they adapted to changing conditions, and over time developed complex ways of interacting with the world around them. Though complex, the development was still somewhat random, depending on both random mutations and environmental advantages gained by that mutation. We call it natural selection.”


“Why do we call it natural selection or why did we adapt?!”

Continue on until you get to “Because I said so!”

You get the point. When my oncologists recommended ABVD as my chemo regimen and asked me if that was OK, on what did I base my answer? Did I know about alkalizing agents, or where in the cell cycle certain chemicals would disrupt replication? Nope. I relied upon the experience of my doctors and what little research I could figure out on my own (and my research is easy because there has been an effective standard for over 3 decades). So was the question to me being patient-centered? Or was it simply shifting liability to the patient? Can we do better?

In the information field (and teaching, and higher education) there is a new approach beginning to emerge: a participatory approach. Yes it involves seeing people as more than just users – someone who uses. Yes it involves greater individualization of tools. But the key to it is actually involving the user/student/patient in the building of systems.

Take those medical records systems you love so much. All those tabs, all those workflows, all those drop down menus. Why is it so cluttered and crowded? Because it is a monolithic system built to handle an entire practice (if not the entire range of practices). Now compare that to something like Facebook.

If you look at what Facebook does, it is amazingly simple. It gives you a profile. It gives you a wall, and it gives you friends (plus advertising and an easy way to sell your privacy to corporations…but that is another rant). Then it gives you the ability to add your own components. Want to add a quiz as to which European City you should live in? Fine, add it. Want to add an invite for Candy Crush? No problem. You actually build Facebook around you. You speak to your friends so you can use your own language. You choose what your interests are, or what groups you belong to, so you can tailor your information flow. In essence it is not designed for you; instead, you design it.

Another example? Take your smartphone. What do you use it for? Phone calls? Sure. Texting? Probably. How about playing games, or looking up the weather, or ordering food? If you have ever added an app, you are not simply a user of that phone, you are crafting your mobile experience.

Today we take apps for granted, but when the first iPhone came out, you couldn’t add one. You were stuck with however Apple defined the needs of a user. Yet today, due to pressure from consumers and the industry, you no longer are just the user of your phone. You are an orchestrator of your mobile experience. Change the background, add solitaire, change the name…you are in charge – so long as you have the knowledge to add apps and such.

Now, how much control does your patient really have in their treatment? Yes, they ultimately have a stated or unstated veto to treatment (explicitly through consent, but also in their behavior, like taking or not taking prescribed drugs). But what else can they contribute to treatment? Does their medical record include not only your notes, but the notes/journal of the patient? Does the chart data come only from the medical instruments at your practice, or does it include the data from the pedometer I’m wearing on my wrist? Does it also include data from my other doctors?

Patient-centered is a great ideal, and has a good amount of evidence of effectiveness. However, the focus needs to not only be on informing the patient, but including the patient. Not only on coordinating treatment with other providers, but with caregivers and patient advocates. I know that sounds both time consuming and only really effective with a sub-set of your patients (those willing and able enough to intelligently add to care), but this is where technology can be helpful.

Rather than laboring over medical records systems that document a patient, what about medical problem-solving systems that allow collaboration and interaction. Yes I can go into “My Chart” through an app and see my test results, or send in a question, but it is really just a read-only history of how I was doing. Where’s my treatment plan? Does everyone have access to apps? No. Does everyone have the ability to fully learn or understand their conditions? No. But many people are willing and able to take true ownership of their health. To be truly patient-centered is not a hand-waving exercise to inclusion through informing, but in true participation and a dedication to teaching patients, not just treating them.