1. Health Literacy: More than Words on Paper Presentation by Linda Shohet The Centre for Literacy of Quebec Truro, Nova Scotia May 9, 2005

2. L. Shohet2 Agenda An information pamphlet: Your feedback Why ask users? How does learning happen for you? Definitions of health literacy: How does it relate to safety, risk, quality? What patients tell us/What the research says: MUHC project Approaches to changing practice and policy in Nova Scotia Where do you want to be in 5 years? How will you get there?

3. May 9, 2005L. Shohet3 Health and Literacy - complex ideas Health can be: Disease management, OR Prevention & wellness Literacy can be: A lack of skills, OR Meaning-making abilities We focus on ideas of prevention and wellness and meaning-making

4. May 9, 2005L. Shohet4 Meaning involves: What is said How it is said Why it is said The value of what is said to listener or reader Meaning is the outcome of an interaction between what is said or written and the person who is listening, reading or watching.

5. May 9, 2005L. Shohet5 How literacy is being measured International Adult Literacy Survey IALS scales : Prose - The knowledge and skills needed to understand and use information from texts, e.g. editorials, news stories, poems and fiction Document - The knowledge and skills required to locate and use information contained in various formats, e.g. applications, forms, schedules, maps, tables and graphics Quantitative - The knowledge and skills required to do arithmetic with numbers that appear in printed materials, e.g. balance a cheque book, figure out a tip, complete an order form or figure out the amount of interest on a loan.

6. May 9, 2005L. Shohet6 IALS scores Each of the scales is split into five levels, from level 1 for the lowest literacy to level 5 for the highest. Key Finding Up to half of North American adults have some with the printed word. Next Survey (to be published in 2005) Includes many questions on health More information on past surveys: Statistics Canada. International Adult Literacy Survey Database http://www.statscan.ca/english/freepub/89-588-XIE/about.htm#4 http://www.statscan.ca/english/freepub/89-588-XIE/about.htm#4

7. May 9, 2005L. Shohet7 Selected definitions of health literacy*… Health literacy combines the thinking and social skills that determine the motivation and ability of individuals to find, understand and use information in ways which promote and maintain good health. Health literacy means more than being able to read pamphlets and make appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment. World Health Organization (WHO), 1998 * All definitions have been slightly edited. Bold lettering is mine. (LS)

8. May 9, 2005L. Shohet8 Four areas of health literacy: Fundamental (or basic): includes language and numbers Scientific/technological: includes some understanding of physical and natural sciences, technology, and scientific uncertainty Civic/community: includes media literacy, knowledge of local, provincial and federal government processes Cultural: includes recognition of community beliefs, customs, view of the world, and social identity From C. Zarcadoolas, A. Pleasant & D.S. Greer Center for Environmental Studies, Brown University Environmental issues can be used as a focus for health literacy: http://envstudies.brown.edu/env/people/faculty/czcdl/literacy.php http://envstudies.brown.edu/env/people/faculty/czcdl/literacy.php Definitions cont’d…

9. May 9, 2005L. Shohet9 Definitions cont’d … World Education (Boston-based NGO) Health literacy is the ability to read, understand, and act on health care information. (www.worlded.org/projects_topic_8.html)www.worlded.org/projects_topic_8.html

10. May 9, 2005L. Shohet10 Definitions cont’d… Health literacy is the degree to which individuals can get, process, and understand the basic health information and services they need to make appropriate health decisions. But health literacy goes beyond the individual. It also depends on the skills, preferences, and expectations of health information providers: our doctors, nurses, administrators, home health workers, the media, and many others. Health literacy arises from a combination of factors: education, health services, and social and cultural. It combines research and practice from different fields. From Health Literacy: A Prescription to End Confusion Institutes of Medicine, 2004

11. May 9, 2005L. Shohet11 Institute of Medicine The Institute of Medicine linked its report Health Literacy: A Prescription to End Confusion (May 2004) to three previous IOM reports: Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (2003) Speaking of Health: Assessing Health Communication Strategies for Diverse Populations (2002) Crossing the Quality Chasm: A New Health system for the 21 st Century (2001)

12. May 9, 2005L. Shohet12 Linked Issues Communication Differences in health care among groups Quality and risk System and organizational change Connections among these issues are not often reflected in practice See recent reports on adverse events. e.g., Agency for Healthcare Research and Quality. (2003). Patient Safety Initiative: Interim report to the Senate Committee on Appropriations. Retrieved January 3, 2005 from the AHRQ web site: http://www.ahrq.gov/qual/pscongrpt/psini2.htm#RootCauses. http://www.ahrq.gov/qual/pscongrpt/psini2.htm#RootCauses

13. May 9, 2005L. Shohet13 Responses to low health literacy: Increase professional and public awareness Education of medical students and physicians Improve patient-physician communication skills Future research: improve methods of screening patients for health literacy study effectiveness of current health education techniques study outcomes and costs connected to poor health literacy trace path of causes to show how poor health literacy influences health

14. May 9, 2005L. Shohet14 In the United Kingdom There is a focus on: the ‘wider’ benefits of learning on health educating health care providers through a National Health Services adult learning initiative (NHSU) – http://www.nhsu.nhs.uk http://www.nhsu.nhs.uk Recommended reading: James, K. (2001). Prescribing learning: A guide to good practice in learning and health. Leicester, UK: National Institute of Adult and Continuing Education. Information: kathryn.james@niace.org.ukkathryn.james@niace.org.uk

15. May 9, 2005L. Shohet15 Most frequent practices so far : Develop tests to measure the literacy levels of patients (more popular in U.S. than elsewhere) Test readability of patient information Rewrite medical information in plain language (in English-speaking countries)

16. May 9, 2005L. Shohet16 Testing readability Test for the readability of health materials such as pamphlets, booklets, basic medical instruction and self-care information, include: ▪ FOG SMOG Fleish-Kincaid SAM - or Suitability Assessment of Materials (Doak et al., 1996) rates factors such as consent, literacy demand, graphic, layout and typography, learning stimulation and motivation, and cultural appropriateness. PMOSE/IKIRSCH - measures the complexity of documents that contain tables, forms, graphs, charts and lists, and translates five levels of proficiency to grade-level equivalencies. Concept of document design holds promise for materials design.

17. May 9, 2005L. Shohet17 Plain Language - the most common response Principle: Health education materials should be written at three grade levels below the education level of target population – 5 th or 6 th grade reading level Questions we need to ask about the benefits of plain language: Claims that plain language writing saves money come primarily from legal, business, insurance and government environments. Evidence is rarely gathered through rigorous reader testing Tests often ask about preference - an unreliable indicator

18. May 9, 2005L. Shohet18 Plain Language - a literature review A review of studies on plain language in the health sector revealed that: Many focused on user preference or satisfaction Very few evaluated outcomes related to usability Majority excluded anyone with less than Grade 9 education and non-speakers of English as a first language Unreliable to generalize findings to populations with limited literacy Atkinson, T. (2003). Plain language and patient education: A summary of current research. Montreal, QC: The Centre for Literacy of Quebec. http://www.centreforliteracy.qc.ca/PROVINCE/QUE/litcent/health/briefs/no1/1.htm http://www.centreforliteracy.qc.ca/PROVINCE/QUE/litcent/health/briefs/no1/1.htm

19. May 9, 2005L. Shohet19 Health Literacy Project at the McGill University Health Centre (MUHC) 1995-present 5 hospitals in downtown Montreal serve a multi- cultural,multi-lingual population

20. May 9, 2005L. Shohet20 MUHC Health Literacy Project Phase 1 1999 -2000 Needs assessment of health information and education needs of low-literate patients identified by nurses as “hard-to-reach” Interviews and focus group-based survey of 114 invited patients, professionals, support staff and family members or caregivers revealed that: –A majority of the patients found written documents not directly useful because of language barriers although this is one of the most common formats for health information. –Patients and professionals see the health education needs of this group differently. –Family members want different information than patients. –Family members and caregivers are interpreters, readers and mediators when there are barriers to communication. –Professionals recognize that they need to validate their teaching but require time, skills and tools to do that.

21. May 9, 2005L. Shohet21 Phase 2 2001-2002 Implement and evaluate selected Ph 1 recommendations ▪Participatory health education committees on three hospital units chose key health messages that could impact on patients’ ability to care for themselves. Writers and designers created multiple versions with intention of identifying the most effective ones for specific populations. Solicited feedback from patients on selected versions of the materials/media Conclusions: –Need a clearer understanding of who are “hard-to-reach” patients before we can develop differentiated means of communication –The term “hard-to-reach” says more about providers than patients. –Need a framework to guide the long-term initiative and identify goals –Patients’ responses to health materials are influenced by many factors beside language and image

22. May 9, 2005L. Shohet22 Phase 3 - Review of medical and education literatures on alternative methods of health communication Reviewed alternative methods of health communication, e.g. plain language, audiotapes, videotapes, interactive media and visuals. Findings to date: –Most evaluative studies on plain language and audiotapes excluded patients who did not speak English, who were unable to read or who had other physical or cognitive deficits, i.e. the marginalized groups we set out to help. Developed a framework to guide the project –· health communication as a shared responsibility of patients and professionals –· role of system factors, language, culture, education –· need to customize communication according to identified barriers/needs –· need to start with the most disadvantaged populations Full reports on all phases including findings and tools are available at www.centreforliteracy.qc.ca/litcent.htm under the button Health Literacy Project. www.centreforliteracy.qc.ca/litcent.htm

23. May 9, 2005L. Shohet23 Phase 4 An Approach to changing practice and policy 2005 - 2009 Successful Health Communication with Marginalized Populations A proposed four-year project of unit-based action research projects, professional development, and creation and assessment of a system wide common communication strategy for the hospital’s most disadvantaged populations Framework includes elements from Canada, US, Australia, and UK Gaps in communication exist with most clients but especially with those who have barriers such as: Literacy Language Education Culture Disabilities: physical, cognitive, LD

24. May 9, 2005L. Shohet24 Common interests internationally Focus on patient needs/ differences Deciding which patients to focus attention on Incorporating health literacy into areas of prevention, treatment, and safety Acknowledging cultural and systemic factors Interest in compliance and empowerment Interest in connection between health and media literacies Balancing quantitative and qualitative measures Distinguishing different communication barriers: What weight does “literacy” carry in each?

25. May 9, 2005L. Shohet25 Making it local #1 Environment in Nova Scotia: What current policies or practices support health literacy as defined by the IOM? – Education K-12/Adult – Health services (preventive and clinical,…) – Social conditions (economy, class, race, …) – Culture (history, ways of life, arts,…) – Politics (platforms, budgets, priorities, …) – Other

26. May 9, 2005L. Shohet26 Making it local #2 Environment in Nova Scotia: What needs to change to support health literacy? Where does literacy fit? – Education K-12/Adult (services, curriculum,..) – Health services (preventive and clinical,…) – Social conditions (economy, class, race, …) – Culture (history, ways of life, arts,…) – Politics (platforms, budgets, priorities, …) – Other (media,

27. May 9, 2005L. Shohet27 Making it local #3 Starting a Five-year Plan Environment in Nova Scotia: What will health literacy mean in NS in five years? What are the three most important things to act on to start the process? What are the three easiest things to act on? Who will take the lead in making each of these happen? Who will monitor progress and make adjustment?

28. May 9, 2005L. Shohet28 NEXT STEPS To be developed…..