Patients Are a Design Problem

When I say "patients are a design problem," I don't mean that the people who happen to be patients are a design problem.  They may well be, but that's an issue you'll have to take up with Darwin or your favorite deity (or, all-too-soon, perhaps a CRISPR editor...).

No, I mean that making people into patients is a design problem.  And it's a big one.

Over the last twenty years, there has been much discussion and debate about whether patients are, or should be, actually "consumers."  But I've never met a doctor or other health care professional who thinks of the people they treat as "consumers," or, in fact, as anything other than patients.

The term "patient," referring to people getting medical treatment, has been in use for hundreds of years.  It is not a coincidence that it is related to being "patient," that is, suffering without complaint.  No wonder medical professionals like to use it.

There have been many calls to change the word -- see, for example, Pat Mastors or Julie Neuberger -- but what we have is deeper than a semantic problem.  Changing the word we use to describe people caught in the health care system doesn't change the dynamics of that system.  A new word would not change how such people are treated or have come to act.

This is a design problem.

Consider the following:

1.  Physician Respect: We treat physicians as something special.  We hear about how difficult it is to get into medical school, how tough the process of being trained as a physician is, how hard they work, and how much they need to know.  We watch them perform miracles routinely on television, and expect our own physicians to have the empathy of Dr. Welby (some of you may have to ask your parents), the encyclopedic knowledge and keen intuition of Dr. House, and the technical prowess of Dr. Shepherd (some of you may have to ask your wife or girlfriend).  That white coat is no longer needed and may, in fact, be counterproductive, but serves to remind of us the deference the health care system believes physicians are due.
2.  Patient experience: It's hard to get appointments.  The appointment time is often just a vague indicator of when we'll actually see our doctor.  We may have to put on an embarrassing gown and get up on an uncomfortable table.  We may have services done to us that we don't really understand and which not uncommonly are unpleasant, to say the least.   We may be asked to fast unnecessarily for hours before blood work or procedures.  We often are unsure about what is going to happen next, or when. It is not a patient-centered system.
3.  Medicalization:  We talk about the health care system, but we really mean the medical care system.  We almost never include, or pay for, the other things that impact our health, like diet, exercise, and environment.  Instead, we seek our health care providers for our health issues and advice, to the point where some physicians now give out "prescriptions" for exercise.
4.  Better, Soon: We've seen remarkable strides in what medical care can achieve, such as antibiotics, polio vaccines, organ transplants, joint replacements, pacemakers, chemotherapy, and advanced types of imaging, to name a few.  We have become a nation of pill-poppers.  When something is wrong with us, we expect to be able to get it fixed, and we expect that to happen quickly.
5.  Confusion reigns: Nothing about health care seems easy.  It's hard to pick a physician, or a health plan.  The terminology makes no pretense at being understandable to anyone not a health care professional.  The bills are practically indecipherable, especially since the pricing behind them is intentionally opaque.  If you need multiple doctors, tests, or procedures -- which you almost certainly will -- you'll have to navigate the maze around getting them.  No one, lay or professional, claims to understand the "system."
6.  Responsibility: We've delegated responsibility for our health to our health care professionals, especially our doctors.  It is more established than ever that regular exercise, moderate eating, and a balanced life would do more to improve our health than any regime of medical treatments.  Yet we continue to expect that the results of our increasingly poor habits will be "fixed."

These are why we are "patients."  These are why we are expected to be patient.

There are constant calls to reform, even disrupt, the health care system.  There are new entrants, new models, new technologies, and plenty of new money.  As I wrote a few years ago, though, most innovations in health care seek not to disrupt the health care system, but to get their share of the spending.

A new article by Clayton Christensen and colleagues points out:

more than $200 billion has been poured into health care venture capital, mostly in biotech, pharma, and devices where advances typically make health care more sophisticated — and expensive. Less than 1% of those investments have focused on helping consumers to play a more active role in managing their own health, an area ripe for disruptive approaches.

Their article highlights Iora Health, while, in another series of articles about disruption, Robert Pearl, M.D., is keen on CareMore, Forward, and Health City.  But none, in my opinion, go far enough.  None redesigns the "system."  None really tilts our system away from medical care system and towards empowering people to take charge of their own health.

We will always need physicians (although not always human ones!), and many other health care professionals.  That's a good thing.  They have knowledge and skills that can help us.  They deserve our respect.

But we should design our health care system around us, not them.

Make the "system" simpler.  Focus it around our health, not our care.  Expect us to have responsibility for our own health -- but ensure we have the tools we need to manage it.  Spend money to prevent health issues, not address them once they've happened.

It won't be easy.  We don't know how to motivate people to be more responsible about their heath, to the point we're excited about digital pills that track whether we take them.  Nifty technology, but I wish we invested more in the underlying problem(s).  Let's make Professor's Christensen's 1% more like 90%.

If patients are a design problem, then maybe people can come up with a design solution.