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EPALE LongReads: What happened when funding for health literacy in Canada dried up?

07/04/2016
by David Mallows
Language: EN

/en/file/health-literacy-canada-epaleHealth Literacy Canada EPALE

Health Literacy Canada EPALE

 

World Health Day makes us consider how a clearly articulated policy on health literacy might improve health outcomes, but Canada seemed closer to such a policy a decade ago than it does today. Linda Shohet, founder and Executive Director of The Centre for Literacy, looks at how it happened - and how Canada dealt with a financial blow.

Between 2000 and 2009, health literacy flourished in Canada. National conferences and meetings, seminal reports, including a Vision for a Health-literate Canada, and the development of The Calgary Charter of principles for developing curricula bode well for a new field. Then funding slowed, the federal government reduced its role, and the national organisations that had provided leadership shrank or closed. 

In 2016, we see many local or regional programmes and projects, some research, and some practice-focused, scattered across a vast country, little of it driven by policy. Despite publication of a landmark textbook on health literacy in Canada in 2014, development of post-graduate training to build capacity has also slowed. It is not evident that a coherent pan-Canadian vision can be revived in the near future.

Where does the term 'health literacy' come from?

The term health literacy was coined in the U.S. in the 1980s with interest coming initially mainly from physicians. Early studies often did not distinguish between literacy and health literacy. The key concerns were about how individuals with low or limited literacy managed various diseases or navigated the health care system. Studies focused mainly on testing patient literacy, the readability and literacy level of health information, and simplifying texts.

Canada initially took a different direction. The term “health literacy” was not widely used in the 1990s and only came into gradual use in the early 2000s. Instead the issue, first raised in 1989 by a provincial public health association and a national literacy organisation, was termed “literacy and health”, suggesting a direct link between them and an emphasis on supporting adults with low literacy.  

It was seen as a social determinant of health and was taken up and actively promoted by the Canadian Public Health Association in the mid-1990s.  In that decade a small number of clinical studies were done across the country, generally by nurses, and community research was undertaken through partnerships with adult literacy organisations. The focus was on plain language/clear verbal communication and on serving adults with literacy problems. Physicians and institutions were rarely involved.

In 1998, the World Health Organisation published a broader definition of “health literacy” not solely for people with literacy problems, and integrating concepts of social skills and empowerment:

Health literacy represents the cognitive and social skills that determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Health literacy means more than being able to read pamphlets and successfully make appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment.

In 2004, a pivotal expert panel report from the U.S. Institutes of Medicine (IOM) asserted that “health literacy goes beyond the individual. It also depends upon the skills, preferences, and expectations of those health information providers: our doctors, nurses, administrators, home health workers, the media, and many others. Health literacy arises from a convergence of education, health services, and social and cultural factors, and brings together research and practice from diverse fields.”  Health Literacy: A Prescription to End Confusion, IOM, 2004

Canada's investigation into health literacy

The IOM report spurred calls in Canada for an investigation of our own. In 2006, the Canadian Public Health Association and the Canadian Council on Learning created an expert panel to conduct a scan of Canadian programmes and research, survey health care providers about awareness, and develop a Pan-Canadian strategy. The panel produced the following definition of health literacy:

The ability to access, understand, evaluate and communicate information as a way to promote, maintain and improve health in a variety of settings across the life-course.

Rootman, I., Gordon-El-Bihbety, D. A Vision for a Health-Literate Canada, 2008 

In Canada, we integrated these international perspectives into a continuing round of national and provincial health literacy conferences building advocacy and engagement of both the literacy and health fields across the country. Our concept of health literacy was increasingly tied to results from the international adult literacy population assessments (IALS in 1994 and ALL in 2003). The 2003 survey included 193 questions applying literacy in five domains of health — prevention, maintenance, managing chronic conditions, promotion, and system navigation. These data became the basis for a seminal 2008 Canadian Health Literacy report and the creation of a map that pinpointed health literacy levels across the country.

The Calgary Charter

The same year, following an international institute on health literacy in Calgary, and recognising the need for coherent health literacy curricula to achieve long-term change in practice, a working group proposed a set of common principles with rationales for curriculum development and evaluation – for population, schools, and health professionals at all levels. We called the document The Calgary Charter in tribute to the 1986 Ottawa Charter for Health Promotion, hoping it might eventually have the same impact on our field as the Ottawa Charter has for public health.

Health literacy is the use of a wide range of skills that improve the ability of people to act on information in order to live healthier lives. These skills include reading, writing, listening, speaking, numeracy, and critical analysis, as well as communication and interaction skills. Health literacy allows the public and personnel working in all health-related contexts to find, understand, evaluate, communicate, and use information.

The Charter proposed that health literacy applies to all individuals and to health systems. It stated that a health literate individual uses the skills needed to find, understand, evaluate, communicate, and use information; that health literate providers present information in ways that improve understanding and ability of service users to act on the information; and that health-literate systems provide equal, easy, and shame-free access to and delivery of health care and health information.

This document has in fact been cited and used in multiple contexts and countries since its publication seven years ago to support an expanded understanding of the dynamic between the individual patient/client and those who offer health services/information and has helped pushed research looking more closely at organisations and systems and their role in making it possible for individuals to engage in a partnership around health. 

Momentum lost

However, momentum has not been sustained in Canada. Just when energy and interest were highest, funding began to shrink.  The national organisation that had produced the 2008 report and supported a national centre of expertise was closed. Other national organisations saw their core funding gradually reduced and ended in 2014, forcing further closures. Pilot projects were reported and shelved, and opportunities to meet in national venues declined.  

The 2012 PIAAC in Canada that surveyed the largest sample of any participating country included no health literacy component in the measured domains of Literacy – Reading components – Numeracy and Problem-solving in technology rich environments, although it did gather information on health status in an extensive background section. A report on the PIAAC results regarding health and other social issues, slated for publication in 2014-2015, is not yet out.  Therefore, researchers and policy makers are currently still using 2003 literacy and health literacy data in their studies, despite changes in the 2012 literacy data.  Even when the report is produced, it will not have data to directly compare levels of health literacy over the past decade.

The future of Canadian health literacy

So, where do we stand in 2016? Canada has great expertise spread across the country but it is not necessarily well connected. No national organisation has taken the lead in promoting health literacy. Of a number of model programmes highlighted four years ago by the Canadian Public Health Agency and others included in the health literacy textbook published in 2014, only a few remain in place after funding ended.

We have a rich archive of exemplary models developed during the good years that could easily be tapped and revived to test or scale up. That is a hope, not a current reality. Very little formal training has been integrated into medical curricula, and accreditation for most online training options has not been maintained.

Canada offers an interesting instance of the challenges in keeping health literacy on the policy agenda and in practice, and many of the issues we face are common to other countries. Funding loss is the primary but not sole reason for this situation. There is an inherent tension between the models of research and practice in adult education and health care.

Despite attempts to create usable definitions, the complexity and continuing lack of clarity in its conceptualisation make it difficult to explain and operationalise. Health literacy continues to be conflated with reading, communication, patient education, or plain language, and many health professionals believe that they are already doing it. 

Until there is required training in health literacy and health numeracy, there will not likely be permanent system change. Without consensus on the core content of a health literacy curriculum, that broad training cannot happen. Should health literacy be taught as a specific subject area or embedded in other courses? 

Particular to Canada, the early focus on literacy as a social determinant of health that might be used to promote it to better effect has been marginalised.  Several people to whom I spoke while writing this blog mentioned feeling that the language of health literacy has been “co-opted” by health professionals and researchers. Canada also has jurisdictional tensions between federal and its thirteen provincial or territorial governments over education and health that can challenge pan-Canadian efforts. 

Hope

Nevertheless, there are many projects and initiatives of promise. The province of British Columbia has developed a dynamic health literacy network of community literacy and public health partners that engages practitioners and researchers in various programmes and projects around specific health issues. 

It depends on a core of committed expert individuals, often working as volunteers, and a long history of engagement.  They offer a possible model of using community-university-government networks to support embedded practice and carry out small-scale research while looking for more sustainable funding.

As part of its Patients First: Action Plan for Health Care, the province of Ontario is currently developing a strategy to address and increase varying levels of health literacy among Ontarians. The Canadian Paediatric Society maintains a commitment to integrating literacy into early childhood paediatric practice and has created a web site to support the practice.  The Montreal Children’s Hospital has sustained a model paediatric intervention called Lire/Imagine/Read that combines guidance on early literacy for families with training in health literacy for physicians and other health care professionals.

Accreditation Canada, the agency responsible for accrediting hospitals and health care institutions across the country, has recently announced the alignment of its Primary Healthcare Standards with the Health Literacy Universal Precautions Toolkit from the U.S. Agency for Healthcare Research and Quality (AHRQ).  Unfortunately, there is limited communication and most of those involved in these initiatives or countless research projects know only what is happening in their own area. 

However, technology offers ways to share through webinars and blogs that are beginning to be used more frequently.  A recently created Listserv, the Canadian Health Literacy and Patient Education Network (CHLPEN), although not actively moderated, has the potential to offer a virtual space for exchange that could be used to great effect. These are likely the only pan-Canadian strategies we will see for the immediate future.  The hope is that the expertise and practical knowledge developed over more than two decades are still recent and relevant enough to be tapped and to fuel a renewed vision for health literacy in Canada.

 

Linda Shohet was founder and Executive Director of The Centre for Literacy, a Canadian national research and resource centre (1989-2015) that played a strong role in health literacy for two decades. She served on the 2008 Canadian Expert Panel and was a co-author of The Calgary Charter.

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