Background Document on Literacy and Health

Conclusion

As was explained in Part 1, the International Adult Literacy Survey (IALS) recalls that nearly half the population of adult Canadians has difficulty with reading materials encountered in everyday life. This has an important impact in the health sector as low-literate patients encounter information, material and procedures that are difficult or impossible to understand and apply. This has a negative impact on their health, both directly and indirectly. Seniors in particular represent a high-risk group: among seniors, the proportion of low-literate patients is higher, as well as their use of the health system and their need for medication. To the large groups of low-literate patients, we add patients who face cultural and language barriers as well as patients who cannot process health information because of physical or cognitive disabilities. We group these patients under the term "hard-to-reach" as it is more difficult to communicate with these patients.

The general response of the health care system has been to develop literacy tests to measure patient literacy, to assess the readability of health materials and to advocate the use of plain language in the production of health education materials. More effective oral communication has been advocated in the context of patient/health care professionals' relationships. There has also been some attention given to other strategies for more effective patient education. The focus in health education remains on individual lifestyles and behavioural changes that are dictated from the top down (Rusek, 1996 quoted in Hohn, 1998, p. 14). The literature offers limited information on the social implications of health literacy and on strategies devised for hard-to-reach patients.

In Part 2, we offer a critique and attempt to complement what can be found in the mainstream literature on health education and health literacy, looking at key issues that are relevant to our project. We review the limits to evaluating patient literacy and the tendency, among many practitioners, to give prevalence to plain language as the key strategy to address health literacy issues. Community development approaches, participatory health education, and education through drama are seen as avenues that broaden health literacy practices and move them beyond the current focus on written information. We present a groundbreaking field experience in the United States that focused on the empowerment of students/patients. This helps us understand the differences between the three concepts of health literacy presented in a piece of research from Australia: functional health literacy, interactive health literacy and critical health literacy.

In Part 3, we profile health literacy initiatives undertaken in various locations throughout Canada, with the caveat that the information in this section has not been independently assessed. Health education and literacy is alive and well in Canada, and the diversity of inititaives and approaches (as is often the case when one looks at the national picture in Canada) is impressive. We have found the whole spectrum of health literacy practices: health information in plain language, training workshops for health care professionals, large-scale patient computer education programs, literacy training for substance abusers, articulated participatory health education/literacy practices and manuals, literacy classes based in community health centres and a province-wide information/advocacy network.

These initiatives, while exciting and often innovative, remain relatively limited. They are, for the most part, isolated from each other, and are at times short-lived. There is no umbrella organization linking them, and/or providing a forum for sharing and networking. Meanwhile, the lack of health literacy programs has a negative effect on the health of thousands of Canadians.

These following points, among others, have helped us define the focus of our Needs Assessment:

1. Plain language is a useful and important first step, but health literacy is much more than plain language.
2. Linking health education to community resources and initiatives outside the hospital, and using participatory methodologies of learning are two important strategies to reach hard-to-reach patients and practice effective health literacy.
3. Hard-to-reach patients should (must?) have an important voice in the project, from expressing their needs during the Needs Assessment process to, later on, deciding aspects of the planned Health Literacy Centre. They must feel safe and secure when expressing their views, and feel that their voice is important and respected.
4. Critical health literacy takes time.
5. Health literacy practice in Canada is very diversified and there is no easily available compilation of current practices. We have not yet found an initiative that has a similar approach to our project.

Our Needs Assessment will look at patient needs in all sphere of health education. It will focus on how hard-to-reach patients learn best. It will give a voice to hard-to-reach patients, their families, support staff and health care workers. It will reach out to health care workers outside the hospital. It will facilitate the discussion around the planned Health Literacy Centre, allowing for patients and others to dream aloud and imagine beyond what is common practice.

There is a need for large-scale commitment to health literacy across Canada, with long-term funding and wide-ranging programming. Long-term partnerships need to be developed, linking the health and education sectors across the provinces and not only in a few communities. Large health institutions such as hospitals need to take on the issue of health literacy in order to communicate more effectively with hard-to-reach patients. The Needs Assessment leading to the planned Health Literacy Centre at the Montreal General Hospital represents a very important step towards developing a solid model of health education, that can be replicated elsewhere in Canada and beyond.