Digital Literacy – Read, Write, Participate (e.g. https://learning.mozilla.org/en-US/web-literacy)
Digital Health Literacy – “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).
Critical Digital Health Literacy – the ability to seek, find, understand, and appraise health information from electronic sources to not only apply the knowledge gained addressing or solving a health problem, but also to participate in the healthcare system.
Aligning with the discussion I just finished on Open Dissertations, I have decided to share a half-baked (draft) idea with you. One might say that this blog post belongs in the land of not-yetness :-). I welcome discussion and feedback – and reference for articles/books I should read. I use the term healthcare provider to mean any healthcare professional, including doctors, nurses, therapists, etc.
Digital health literacy has been defined as “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). I want to explore this further, as I feel that the definition is not complete. It touches on the technical aspects of digital health literacy, but misses the contextual issues and social issues associated with developing a new literacy. It also doesn’t address patients’ participation in the generation and dissemination of health related knowledge.
“The questions that have mostly been asked by agencies attempting to introduce literacy to societies where it is not been widespread, have generally stemmed from emphasis on the technical problems of acquisition and how these can be overcome.” (Street, 1995, p.28).
“By definition, literacy is being transferred from a different culture, so that those receiving it will be more conscious of the nature and power of that culture then of the near technical aspects of reading and writing.” (Street, 1995, p.30)
Street’s (1995) description highlights a challenge in Norman & Skinner’s (2008) definition of digital health literacy, as the focus is on the technical acquisition of knowledge as is defined by health professionals. However, those that are receiving this health information are not from the dominant culture – where the dominant culture can be seen as the language of healthcare professionals. So, the problem of digital health literacy from a patient perspective is in the application of health information into the specific context of that patient, where the context includes medical condition but also the country and the culture of the patient and healthcare provider.
“In many situations it is the dominant group within a society that is responsible for spreading literacy to other members of the society into subcultures within it” (Street, 1995, p.30)
We see this in healthcare education. It is healthcare professionals (dominant group) who are responsible for educating the patients. Street (1995) highlights that literacy is not just a learning of new skills but also involves “profound changes in people sense of identity and then what they took to be the basis of knowledge” (p.31). In the context of critical health literacy, the patient identity and role shift from a passive patient who follows doctors orders, to a patient who works with their healthcare team to come up with treatment plans that work for that individual patient. Health literacy involves a shift in power, but not a total shift, from healthcare provider to patient, allowing the patient to take some control over their healthcare.
When it comes to digital sources, the definition of what is considered useful or valid is from the perspective of the dominant group – the healthcare provider. However, many patients also value information that comes directly from other patients, rather than information that is pushed down from healthcare providers. Patients are the experts in their own lived experience, however, lived experience information is not valued by many healthcare professions unless the patient is also a healthcare professional. For example, when a medical doctor who gets cancer then blogs about their patient experience with cancer, their blog is seen with a much higher regard than a blog by someone who is not a healthcare professional. However, that doctor doesn’t experience the patient role the same way patients who are not doctors experience the patient role. Again, we have someone who is in the dominant culture being given more credibility and yet their experience is not representative of the experience for those who are not in the dominant group.
I feel like what I’m trying to do here is to provide validation for the sharing of patient voices in the language that patients understand. The goal is not upward communication, that is, the goal is not to allow patients to better communicate with their healthcare providers, rather the goal is to help patients better understand their experience using language that they understand. We see in patient blogs the adoption of medical terminology. Patient bloggers do not make up a completely new language, rather, the language use is a mixing of the medical terminology with the non-medical language that is used by everyday people. So the focus is on peer-to-peer ways of communicating.
My argument is that one of the goals of critical digital health literacy is about giving voice to patient narratives for the purpose of helping patients better understand their lived experiences. I say one of the goals because I agree that a goal is to improve patient-healthcare provider communication, but I also want to add to it that there is also an aspect of patient-patient communication that is just as important or maybe even more important for those dealing with chronic or critical illness.
Aligning with the goal of critical theory, there is a social justice cause in critical digital health literacy. This literacy helps to highlight the problems with the traditional methods of medicine where the doctor is see as the expert and the patient is in a subservient role as someone who healthcare is performed on rather than with. In traditional models the patient is a passive receiver of healthcare, rather than someone who takes an active role in their personal healthcare. Part of developing a critical digital health literacy is to help patients gain the knowledge and skills they need to find their own voice within their own healthcare. There is also a goal to help those patients who wish to advocate for change, the knowledge and skills necessary to do that advocacy work.
On this front, my personal social justice activity was to create a course called Should I blog? (available at shouldiblog.org). When I created it, I had no thoughts of critical digital health literacy or what role the course might play in such thing. Now, I can see that it is a small part of what is needed to help patients find their voices, but also help patients find other patients so that they don’t feel so alone.
Norman, C.D., & Skinner, H.A. (2006, June 18). eHealth literacy: Essential skills for consumer health in a networked world. Journal of Medical Internet Research 8(2). Doi: 10.2196/jmir.8.2.e9
Street, B. V. (1995). Social literacies: Critical approaches to literacy in development, ethnography and education. New York: Longman Publishing.