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Life literacy – If you can’t explain it to a six year old…

By September 18, 2016November 4th, 2018Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher

I play baritone saxophone in community Latin and blues funk bands.  Our professional musician leader teaches us the language of music theory – this week it’s Minor Dorian and Lydian scales. As an amateur, I understand about a third of what he’s talking about. Still better than a quarter understood six months ago. In Washington this week I reviewed funding applications for PCORI (Patient-Centered Outcomes Research Institute).  I serve as a patient reviewer. I made a point about the impact that the frailty of a person with congestive heart failure might have on readmission to the hospital. The review leader asked me if I meant xxxxxxxx (something about the methodology of the research study).  I had to say, probably not, since I didn’t understand a word you just said. I understand about 2/3 of the scientific conversation at thesparents-teachers-meeting-vinod-school_b2840c36-5634-11e6-bc43-9f8bec77897ce sessions. I also take part in calls for OpenID HEART Working Group that intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others. I still don’t really understand those words. I understand about 25% of the conversation, up from the 5% understanding when I started a year or so ago.

The healthcare profession talks about health literacy. Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.

Experts often think in terms of the literacy of those less expert. They think, Let’s dumb it down. I look at it differently. First, as Albert Einstein reportedly said If you can’t explain it to a six-year-old you don’t understand it yourself. The biggest challenge I have writing this blog is to write my stories, my lessons, in a language all my readers can relate to – Patients/Persons, caregivers, clinicians, techies, leaders, policymakers. Second, how do we help people who are amateurs about our lives better understand our expertise – our lives and our culture? How do we teach life literacy to health professionals as we meet them?  I welcome advice about teaching life literacy to those amateurs.


  • Sue says:

    Oh wonderful! Danny. Thanks so much. I experience this difficulty in ANY setting where acronyms and specialized/technical language (jargon?) is used. And too too often I don’t have whatever it takes (courage/patience/a way past my too easily arising anger/time to figure out what I’m feeling about what I don’t understand) to simply stop the whole conversation and insist we switch languages and start again so I can ask questions as we go along.
    The best doctor/patient communication experience I ever had was when taking a friend to an ENT who was going to perform surgery on her to repair a broken bone in her face between her nose & eye. He spoke clearly, explained carefully, and had us sit there while he wrote up the whole thing for his records and THEN read it to us and asked if he got everything correct from our perspectives, and encouraged us to correct or add or subtract anything from what he’d written down.
    I was blown away!