Patient Health Literacy

I posted this originally over on my academic blog: However, I think those who read this blog are in a better position to answer the question I’m asking at the bottom – so please bear with some of the academic language.

In Arthur Frank’s (1995) seminal book The Wounded Storyteller, he cautions “On rare occasions when I have taught this book, students’ biggest initial difficulty is to stop reframing everything ill people say into a question of how some health-care worker might respond.” (Location 115)

I often find myself falling into that trap. I find myself thinking about my research, and the focus on peer-to-peer patient learning, and yet seem to feel that the value in the research is in the change in how health-care workers respond. Really, my focus should be a change in how my work can help patients and caregivers find agency within the healthcare system.

This idea of value of knowledge (or value of literacy) is something that Brian Street talks about in Social Literacies: The Schooling of literacy. I talked a little about it in my post on critical digital health literacy. In the chapter I’m reading now, Street (1995) talks about how the definition of what literacy is (the value proposition) is defined by the dominant culture. When we talk of a critical literacy, we are turning that around and looking at it from the perspective of the non-dominant – perhaps those who are seen as not literate.

In the health literacy context, we see the definition of digital health literacy from the perspective of healthcare systems –  “the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem” (Norman & Skinner, 2008, para. 6). To me, this definition feels like what health professional want patients to have, not what patients necessarily want or need. The health literacy definition is from the perspective of the dominant culture. It is also very solution oriented – as if there were only one solution to the “health problem”. The human body is complex. It is a complex system. There are many different ways in which to approach a health problem, and not all of those involve solutions.

Now if I look at it from my perspective as a patient, and not a healthcare professional, I can see literacies in a different light. If I look at what I consider important to be “health literate” from a patient perspective, I’d say:

  1. Understanding the disease well enough to explain it to both non-medical professionals and medical professionals (knowing that the language of the medical profession is not the same as the language used by the general population).
  2. Understanding the healthcare system well enough to get the care you are looking for. This in part means knowing who to ask which questions to, and knowing even what things are available to you as a patient. Understanding the hierarchies within the healthcare system helps to ensure you are asking the right people the right questions.
  3. Knowing where to go to get support from peers.
  4. Knowing how to identify individual experiences of disease experience versus generalized experiences. That is, developing an understanding of what aspects are typical and what aspects are unique to the individual experiencing the disease.
  5. Understanding the disease well enough to search for information on the internet, and discern appropriate sources of information (e.g. being able to identify snail oil).

My question to you is, as a patient, what you see as the important things YOU need to know in order to manage your personal health? 

Feature image: By NASA/MSFC/David Higginbotham – NASA Image of the Day, Public Domain, Link

  • Becky


  • Hi Rebecca, now that I’m finally taking a course in mindfulness I realize a lot of my medical literacy is distorted by emotion. Except, isn’t that inevitable? So how do we function in an intelligent manner? Or maybe our passions clarify what it IS to have our equilibrium knocked off its wheels?

    How can illness NOT be personal? And can we accept, or at least accommodate / adjust for a truth that is perceived so subjectively? I’ve come to understand that a lot of medical people deliberately avoid how I “feel.” While I’ve paid a great price to attain the knowledge (literacy?) of being ill, those who hold my life in their hands will not acknowledge it. So what kind of literacy do they practice?

    • Scott, I think that what you are explaining, Arthur Frank would call a Chaos Narrative – and when you are in the middle of a chaos narrative, you are not in a position to articulate your narrative – as you put it, your emotions, but also your inability to think, gets in the way. When there are cognitive barriers, this becomes extra challenging – and it is important that we also have caregivers when we talk about patient health literacy – because sometimes it is the caregiver that is making the decisions not the patient directly. So, in that situation, the question becomes, what do caregivers need to know? What are the literacies necessary for them to successfully advocate for the patient?

      • I understand Chaos Narrative and I’d be dead if my wife Leslie hadn’t intervened on my behalf and FORCED the medical system to do something for me on two separate occasions. I’m still too angry about it to discuss the details but will say that it’s important to have an advocate who won’t be bullied or dismissed.
        What I find odd is that though the medical system is presumed to serve those who may be struck inarticulate by their illness, the system itself has little tolerance for those who behave as if they were ill or desperate.
        And yeah, emotions mangle everything. I’m no longer able to talk to doctors or to get that feeling of safety when visiting the main cardiac clinic. And the cancer institute is totally off limits. After the system fails a few times, all the assurances meant to build trust collapse–it’s all raw chance and being ill only attracts disapproval.
        This is a good resource:
        Harm to Healing – Partnering with Patients Who Have Been Harmed

      • Think I will restart this and try to answer your questions as if I was trying to resolve problems and not do battle with THE SYSTEM–heroic as it may be. Much of what we have learned in the rural Alberta system I think may be useful to others in rural settings all over North America. Have to think this over and add things later though the most important tip I’ve had from everyone here, and especially the Home Care Nurses who do post-hospitalization care one the city system has released us back into the wild:
        Advocate for yourself as directly as possible! Or have your partner do this for you.

        The system is built around the presumption that your primary physician is your attentive companion and faithful communicator to the rest of the system. Generally, this puts your fate in a transaction between one busy receptionist at the specialist’s level and an untrained / overworked receptionist at the primary doctor’s office. This is a too-fragile and not-monitored process.

        More later.

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