Flipping the Concept of Health Literacy

Patient problem or healthcare problem?

Upon the recommendation of colleagues, I have been reading a fantastic book by famed designer, Alan Cooper, titled The Inmates are Running the Asylum. It’s a book about software design, but it’s changing the way that I think about healthcare.

Cooper talks about the problems with the usability of software:

We industry insiders toss around the term “computer literacy,” assuming that in order to use computers, people must acquire some fundamental level of training. We see this as a simple demand that isn’t hard and is only right and proper. We imagine that it isn’t much to ask of users that they grasp the rudiments of how the machines work in order to enjoy their benefits. But it is too much to ask.

He goes onto say:

Users should not have to acquire computer literacy to use computers for common, rudimentary tasks in everyday life. Users should not have to possess a digital sensitivity to work their VCR or microwave oven, or to get email. What’s more, users should not have to acquire computer literacy to use computers for enterprise applications, when the user is already trained in the application domain. An accountant, for example, who is trained in the general principles of accounting, shouldn’t have to be computer literate to use a computer in her accounting practice. Her domain knowledge should be enough to see her through.

Now let’s just switch out the term “computer literacy” for “health literacy”.

We all know that the “operating system” and “user experience” of healthcare is complicated and problematic; yet we expect the user to adapt to our impossible to navigate systems and respond to our difficult to understand communication tools. If the user fails to master our obtuse system, we label them as having low “health literacy” (check out over 7000 articles published on the topic in Pubmed!). I am reminded of the patient “adherence” problems that I have written about before, which leads to me ask:

Is it a patient literacy problem or a healthcare design problem?

Shouldn’t the design of the system be created so that anyone at any level of health literacy can navigate the system for themselves or for their loved ones? Shouldn’t the user interface be so intuitive, so “smart”, that any user could be successful at achieving health?

Cooper warns us about the problems of what he calls “software apartheid”.

As our economy shifts more and more onto an information basis, we are inadvertently creating a divided society. The upper class is composed of those who have mastered the nuances of differentiating between “RAM” and “hard disk.” The lower class consists of those who treat the difference as inconsequential. The irony is that the difference really is inconsequential to anyone except a few hard-core engineers. Yet virtually all contemporary software forces its users to confront a file system, where your success is fully dependent on knowing the difference between RAM and disk. Thus the term “computer literacy” becomes a euphemism for social and economic apartheid. Computer literacy is a key phrase that brutally bifurcates our society.

Unfortunately this already exists within our healthcare system, in the form of health disparities and the haves and have nots. Could design help us change this? I hope so.

I tweet and blog about health, technology, and participatory design as “Doctor as Designer”. For blogpost updates, sign up here.

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