I’ve spent most of the past year learning about access to healthcare and thinking about how we might improve the patient experience so that patients have better outcomes. It’s become increasingly clear to me that the healthcare system places a high burden on patients, and it is the patient who suffers when healthcare lets them down.

Take this article in the New York Times, New Medicare Law to Notify Patients of Loophole in Nursing Home Coverage. The article explains one of the many things that is all but impossible for patients to understand about healthcare: the difference between in-patient care and out-patient care. Most people think that in-patient care means staying overnight. Not so: there are many ways to stay overnight in a hospital, wearing a hospital gown and sleeping in a hospital bed, where you are not actually an in-patient. The Times article describes being under observation, which can technically be done as an out-patient and still have the patient in the hospital for many days.

The real problem here is the disconnect between what it means to be an in-patient versus out-patient. For the patient themselves, they rarely know if they are in- or out-. They only know that they are at the hospital, and that something is wrong enough for them to stay overnight. Patients have no idea about the strange intracacies of in-patient versus out-patient. To the patient, there is no observable difference between the two. They only find out later when the bill arrives.

Instead of fixing the underlying problem, this change is instead adding to the burden on the patient. Patients now have to be notified if they have stayed more than 24 hours as an out-patient under observation, they could have significant out-of-pocket costs for their treatment. Not only is the patient sick enough to require in-hospital observation in the professional opinion of a doctor, now the patient also has to worry about how all of this is billed. They have to know the difference between in-patient and out-patient. They have to find someone who knows whether the medical billing will be coded as in-patient or out-patient,. And they have to do it at a time when they are particularly ill-equipped to think about such matters.

It’s hard to be a patient. Let’s not add to the burden of being sick, and needing medical treatment, by also expecting patients to make decisions about their medical treatment based on arcane medical billing.

As I’ve been working at Genentech, one thing that has quickly become apparent to me is that healthcare is far more than the clinical experience.  That clinical experience, between me and my doctor or maybe me and a x-ray tech or something like that, is only one of the pieces of healthcare.  There are many aspects that are just as important as the clinical experience.

In “How hospitals hope to boost ratings on Yelp, HealthGrades, ZocDoc and Vitals”, the Washington Post says this:

When patients are asked to rate how doctor quality should be measured, clinical outcomes, such as getting cured of a disease, rarely come up, said Lisa Suennen, who advises health-care companies. Patients talk about whether a doctor or nurse was kind to them, or whether their experience was fast and convenient. It’s assumed that the doctor is going to treat their illness or condition.

The clinical experience is necessary, but not sufficient, to have a good healthcare experience.  The user experience of healthcare includes the clinical experience, as well as the ease of getting an appointment, the wait time before your appointment, how test results and next steps are communicated with you, whether your doctor follows up with you.

Perhaps this is a reflection of Genentech and its treatments, but I wonder if the last sentence is actually true.  Or maybe it’s true for lots of cases, and it stops being true when the diagnosis or treatment is difficult.  As a patient, it can be hard to assess clinical outcomes.  If I had a cold and now I don’t, how do I know if the clinical experience could have been better?  If I have a chronic condition, how do I assess whether I could have gotten a better clinical experience?  It’s easy to assess whether I feel like my doctor has listened to me, whether my doctor has treated me like a person and not a condition, whether my doctor is responsive to my concerns.

Healthcare is hard.  We have to remember that the clinical aspect is only one part of what makes healthcare hard.  We have to get the patient experience right.

In every role that I’ve had, I’ve had to remind myself and my team that we are not our users.  When you’re a software engineer creating a software application, it’s very easy to see yourself as the user.  It was true when I worked at IBM on databases, it was true when I worked at Microsoft on Office:Mac, and it was true when I worked at VMware on vSphere.

In each of those instances, while we as the application development team did use our applications in one way or another, we weren’t representative of our real users.  We had more knowledge of how computers and software work in general.  We had more knowledge of how our specific applications work, and many other related applications too.  We were far more likely to use our software deeply.  When I was at Microsoft, I learned that, as an organization, we sent and received significantly more email than other organizations of our size and general structure.  This meant that I couldn’t project from my usage of Outlook to other users.  I had more email, I had more folders, I had more events on my calendar, and I was far more likely to use deep features in that application.

I find myself having a similar conversation in healthcare user experience.  We are very patient-focused.  Being patient-focused is excellent.  We have a lot of empathy, which is also excellent.  In using the term “patient”, we can project ourselves into the situation — after all, we’ve all been patients at one time or another.  My doctor refers to me as her patient, even when I’m just in for a checkup.

But I am not the patient here.  When I project myself into the patient’s situation, it is easy to forget that I probably differ from the real patient.  I am a reasonably healthy and well-educated 39-year-old married woman in Silicon Valley.  Not only that, but I have also learned quite a lot about how healthcare works in the past few months.  Most patients don’t have the benefit of the knowledge that I have acquired.  And if I’m considering the user experience for the patient, they are probably not, or are no longer, a reasonably healthy person.

This point is very important.  Someone who is reasonably healthy is better able to make well-informed decisions.  We have a limited amount of cognitive resources available.  There are only so many decisions that we can make in a day.  That’s why habits are so powerful: a habit is (at least!) one fewer decision to make in a day.  If you always have a latte and a banana on your train ride to work¹, you don’t have to expend cognitive resources thinking about what to have for breakfast that day, and thus you have more cognitive resources to use later in the day.  People who are in pain or who are stressed have fewer cognitive resources available to them than people who aren’t in pain or stressed.

In creating a healthcare user experience, I have to remember that our patients have probably had a life-altering diagnosis.  They could have had a long and difficult journey to get to that diagnosis.  They are probably tired, and in pain, and stressed.  They are already dealing with a difficult situation.  We have to create a healthcare user experience that doesn’t have an undue cost of cognitive resources at a time when the patient has few, if any, to spare.