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Table 1 Participant, HL researcher, key-informant, & health care professional quotes

From: A conceptual model of functional health literacy to improve chronic airway disease outcomes

Conceptualization Process
 “You need to focus on functional health literacy, which is a concept that describes the practical application of a wide range of cognitive and non-cognitive skills in real life, rather than a single literacy skill in a clinical setting.” (Key-Informant)
 “Frame your model to develop a functional health literacy tool, which is the outcome of intervention rather than the independent variable and captures how people use literacy for their health. Your framework for health literacy should follow a life course determinant model.” (HL Researcher)
 “Most of the HL work myopically focuses on the patient side. It’s time to focus on health care professionals and the system’s health literacy. Doing so, we need to work with public health professionals, work with journalists. Need to measure both sides of the partnership and the context [patients and care provider]. Analyze the tasks, tools and systems.” (HL Researcher)
Proposed CADMaHL Model
 “… well, your framework should cover two different things: I think if you want to measure ability to obtain and understanding the concepts, information, and services, I would go with the first four domains, accessing, understanding, communicating and evaluating. If you want to measure people’s agency and confidence in using information to make change, I’d go with the Use domain at the end of the spectrum.” (HL Researcher)
 “Your definition [Calgary Charter definition of HL] seems adequate except from the addition of a link between health literacy competence and changes in lifestyle or disease management practice.” (HL Researcher)
 “To me, health literacy means ‘enacting’ or ‘putting into practice’ the knowledge for living healthy. I would like to see a tool asking patients [to] illustrate how they would actually enact or use information they obtain into self-management practice – this is health literacy!” (Respiratory Educator)
Module 1.1 Access
“Whether individuals are competent to access needed services, handle transitions, and find relevant information, which indeed are the navigation skills”. (Key-Informant)
“Maybe you should add navigation skills into the accessing information domain to see if you can assess your patients’ ability to seek and find needed information.” (Key-Informant)
“Lots of people think they can go and find information [themselves]; everything they need to know about medications now, yet 80% of the stuff you find on the web is crap. So, unless they go and get good advice from their doctor, they are going to be misled by internet and exposed to unnecessary risk.” (Patient)
Module 1.2 Understand
“I use plain language and then the teach-back method to get the patients to show me what they retain. For example, when I am teaching an inhaler, I have placebos for them to use to show me what I have just taught them. So, sometimes they get to understand that way”. (Respiratory Educator)
“[In using prednisone] some things might not be clear to people because of jargon [used by the doctor] which might make this more difficult”. (Patient)
“Still, I do not know the different types of inhalers; I know one helps me faster than the other, but I don’t really understand the difference between the puffers. Information in English that are verbally translated to a foreign language are often difficult for patients (non-English speaking) to understand”. (Patient)
Module 1.3 Evaluation
“If after following the doctor’s information and instruction I am actually able to manage my chronic condition, and actually able to see that the amount of flare ups have been decreasing, I would apply it in my daily routine when I get positive reinforcement.” (Patient)
“How do I know whether the information is useful? I’ll try it out, what, like, if the doctor has said and if it works then I’ll follow. So, it is a trusting of my doctor’s knowledge and also my feeling that it works for me.” (Patient)
“… it [information] has to be able to allow you to use it to make some sort of a strategy and then be able to evaluate if it’s working, if it’s not working, if it needs to be adjusted before you apply it again.” (Patient)
“The person’s ability to find relevant health information and support is the first step to self-manage their disease. It highly depends on patient’s needs to assess the information they receive (with a recognition that relevance of the information depends on their current personal needs and changing contexts of their lives) and use this understanding in decision-making which will lead to actions which are health enhancing.” (HL Researcher)
 “In order for information to be useful, first of all, you have to identify with it. It has to be pertinent to you. It has to be accurate. It’s something that I’ll look at and it might raise a question or two that I can take to my doctor.” (Patient)
Module 1.4 Communication
“My doctor should convince me why I have to take a new medication, but there are other people around me that always ask ‘why [are] you taking this medication?’ ‘Don’t listen to them [doctors].’ ‘That’s not good for you, but you have to decide.’ That’s the kind of communication challenge that I’m normally juggling, what should I do? Should I listen to my very good friend [sic] -- my family next to me for many years? Should I listen to my doctor because I trust my doctor?” (Patient)
“I feel that gender differences are a barrier for communication with health care providers.) I know Muslim women have to go to a woman doctor because they are not allowed to have another man see any of them. It affects some cultures because they can’t you know. It’s just the way it is”. (Patient)
“People don’t like telling their doctors [disease-related] things. I feel the honesty is not there. I am not excluded from that.” (Patient)
Module 2. Output
 “I just kept on smoking into the 1990s and then I quit. That’s when it was explained to me clearly [by my doctor] that I wouldn’t live too long with COPD if I didn’t stop smoking.” (Patient)
 “A health-literate person is capable to enact or put into practice the information (actually practice knowledge) for living a healthy lifestyle. Therefore, I think change or reinforcing healthy lifestyle practices should be the main output of health literacy.” (HL Researcher)
 “I followed instructions [given by my doctor] and monitored my asthma mainly because of my experience in using it and it worked; so, it was the feeling of need and trust to apply it.” (Patient)
 “Well, I believe to integrate information into lifestyle, one needs readiness for change and motivation to use the information.” (Patient)
 “Application of health information in routine disease management practice is a self-reflexive action component whereby the person possessing the health information uses it by taking action on their own behalf for the purpose of changing and improving their health. The patient should have enough skills to use health information more directly to make judgments about what to do or not to do.” (Respiratory Researcher)
 “I think the reason patients use the information and incorporate it in their disease management is because of its safety; that’s the information and services is being safe to apply; like if they see positive results from something I’ve told them, whatever it may be like, you know, if you take these inhalers properly [for] 6 to 8 weeks, your shortness of breath will improve, and if they see those results then they’re more likely to be willing to be receptive to other information [received from me] and actually use it. There is a clear recognition that if they use information, their lives are going to be better.” (General Practitioner)
Module 3. Outcome
 “If you don’t evaluate a health outcome relative to HL, you’re selling yourself short. Better access and comprehension should lead to better outcomes. HL is not meant to be normative, and doesn’t predict compliance, but should, overall lead to an improvement in the aggregate.” (HL Researcher)
 “Health literacy is one of the most powerful tools we have to empower people.” (Respiratory Doctor with HL Knowledge)
 “Empowerment is a key element of health literacy. It includes not only health promoting behaviour but also the ability to perform primary and self-care and, also, motivate patients to ask questions.” (Respiratory Doctor with HL Knowledge)
 “I think HL is empowerment of obtaining and understanding health information and utilization of the information to make sound decisions (health-enhancing decisions). Patients need reliable and user-friendly information about how to stay in good health and the effects of lifestyle on their health.” (Respiratory Doctor)
 “One of the most obvious impacts of improved HL is an empowered individual with basic skills to self-assessment, self-management as well as awareness of the changes happening in their health. Altogether may reveal the level of effective application (functionality) of gathered information in their real-life situations revealing their skills to act to improve health.” (Health Literacy Researcher)
 “HL should empower people with self-care skills, assertiveness skills and problem-solving skills.” (Respiratory Doctor)
Module 5. Impact
 “We need a broad and integrative approach which will be messy and sometimes changes people’s lives, as I believe health literacy is not merely increased knowledge but it should be eventually ended with a change in behaviour.” (Respiratory Researcher)
“[In measuring the impact of health literacy] Multiple sectors need to be engaged and messages must be crafted and supported using data and language that resonates with each target audience”. (Health care Policy Maker)
“It is important that health literacy supporters be prepared for capitalizing ‘windows of opportunity’ by demonstrating the powerful contribution health literacy can make to health promotion, disease prevention and care”. (Health Literacy Researcher)
Module 6. Crosscutting Factors
 “… [Patients] are less inclined to ask questions due to their cultural beliefs and that makes it harder for them to follow instructions or feel confident with asking questions as well.” (Clinician)
 “Some individuals are intuitive in terms of how they apply their experience in understanding the information and some others are more analytical and they both have different temporal demands on how they absorb the information and make sense of it in their routine life.” (Policymaker)
 “If they don’t see the priority of using information for their health, its use is pathetically low and they are not going to engage in it. That’s because most people’s lives are so crap and using the information that looks boloney to them isn’t going to help them with anything. So, we can sit in our offices and put all these messages out, but unless the person’s context allows them to use it, that is they are safe to use it or they need to use it, then they see there is actually a need to act on it.” (Respiratory Doctor)