What Would Healthcare Designed By Patients Be Like?

BBC News had an article/video that asked the provocative question: What would a city designed by women be like?  It focused on efforts in Barcelona, led by design group Punt 6, to address existing, if usually unintentional, design biases that favor men over women.  The classic example, of course, are toilets, the design for which usually are focused more on numerical equality that equal availability or on who is more likely to have a stroller/diaper bag. 

A similar article in The Guardian earlier this year focused on Vienna's design efforts for more gender equality.  Civic leaders there realized:

Vienna was being designed by male planners for men like them: going between home and work, by car or public transport, at mostly set times. There was no accounting for unpaid labour such as childcare or shopping, carried out mostly by women, in many short journeys on foot during the day.

I'm mildly interested in urban planning, and certainly support gender mainstreaming, but all this inevitably makes me think of healthcare.   

We certainly do not have a healthcare system designed for women.  Forget toilet disparities; think about mammograms or pelvic exams.  Think about barriers to contraception or to abortion services.  And think especially how women (and men!) tend to have worse outcomes when treated by male physicians, who are, of course, most of our doctors.   

One researcher, looking at heart attack outcomes, described the differences as amounting to "a lass ceiling on life." A colleague of hers concluded: "The penalty for being female is greater."

No, our healthcare system is not designed for women.  Or minorities or low-income families, for that matter.  I'll go further: it's not really designed for patients. 

Abraar Karan, MD, MPH had an interesting essay in BMJ, The dehumanization of the patient.   He quotes famed physician William Osler:

Dr. Karan worries: "We inevitably become accustomed to seeing people when they are sick, in hospital gowns and beds, looking for help," and notes his surprise at seeing one former patient in her street clothes:

 I remember thinking how odd it was seeing her in “normal” clothes, without IVs in her arms, or EKG leads on her chest. Seeing her as just a regular person, walking out into the world like myself, was a confusing feeling. I think that this disorientated reaction is a symptom of a larger problem: what I see as the systematic dehumanisation of the patient.

There is perhaps no better example of not being designed by patients than the hospital gown.  It serves a purpose, but manages to be uncomfortable and unrevealing, as if intended to emphasis how powerless and out of their element people wearing them are.  Dr. Karan asks:

"With all this in mind, I must ask: is there any benefit in dressing patients in a hospital gown? Why should we systematically remove the simple things that make people feel like themselves?"

Why, indeed.

No, ours is not a healthcare system designed by patients. What would a healthcare system designed by patients be like? 

It'd be less expensive, for one thing.  We're spending too much of our income on healthcare expenses.  Patients would never design a system where life-critical drugs like insulin have become unaffordable.  Healthcare is often most expensive for us is often when we're least able to afford it; having an expensive healthcare episode has dramatic adverse impacts on both employment and income, creating a double economic whammy.

It'd be less complicated, for another.  Healthcare professionals, especially physicians, are well-trained and are accustomed to healthcare terminology, which often comes across as meaningless jargon to patients.  People hear it often at times of great stress or distraction, and it's no surprise that over half of patients forget their doctor's instructions.  I've previously called this problem "healthcaresplaing;" it benefits no one and harms too many. 

It'd involve much less waiting and many fewer forms.  Ask people their most common complaints about the healthcare system, and the long waits and endlessly repeated forms would be on everyone's list.  It's as though the healthcare system doesn't value our time and doesn't remember what we've already told it. 

It'd recognize and take advantage of our social connections.  It's oft-stated but still probably true that women make most of the household's healthcare decisions, and our health habits are highly influenced by the health habits of those around us.  Failure to take into account our social situation and supports makes health care much less likely to be effective. 

It'd expect us to be more involved in our health, and in our healthcare decisions.  Let's face it; too many of us have punted on good health habits, and delegated many/most of our healthcare decisions to healthcare professionals.  Our healthcare system has adapted to both of those, but it shouldn't.  We need to do better, and the healthcare system shouldn't just allow those behaviors, but it should enable and encourage them.

It'd start in the community, not in healthcare offices.  Most of what impacts our health is driven by factors other than healthcare services -- our genes, our environment, our socio-economic situation, and other factors.  We need healthier communities and healthier lifestyles long before we need healthcare services. 

It'd ensure patient involvement in all decisions.   How many healthcare conferences are there where there are no patient advocates on the agenda?  How many design meetings happen without patient participation?  How many institutional decisions happen without patients weighing in?  The healthcare system is designed with professional expertise and, all-too-often, fiscal goals in mind, which may end up being good for patients but doesn't ensure it is. 

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I keep in mind Dr. Bon Ku's great observation: "most of us don’t realize that everything in health care is design."  Our current approach has led us to many of the great triumphs healthcare has had, but also to many of the great problems healthcare has created.  

Patients -- people -- aren't (usually) physicians, or architects, or urban planners.  There is expertise that we need in designing a better healthcare system.  But those experts need to recognize that we are the experts in our lives, and be sure our expertise is included in design decisions. 

We can do better.  Take, for example, advice from the esteemed Zayna Khayat: 

When we run design workshops with patients, families, clinicians, administrators, policymakers, we have a "rule" that if we do not agree on something, the patient decides.

That seems like a pretty good rule of thumb.