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Health Literacy:From Discussion to
ActionMay 2012
Rima E. Rudd, Sc.D.Harvard School of Public Health
Boston, Massachusetts USA
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Kia OraWith gratitude
Down Under ExplorationsNew Zealand JourneyPartnership Developments
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LiteracyCore componentsReadingWritingSpeakingListeningCalculating [math, math concepts]
Social Meaning Identity Dignity Inclusion &
participation Civic Economic Cultural Intellectual
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Pedagogy: Paulo Freire
Naming and Owning the World The word is not the privilege of some few men, but the right of every man
Pedagogy of the Oppressed, 1967
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Literacy in Industrialized Societies
Literacy influences one’s ability to access information and to navigate the highly literate environments of modern society
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Literacy and Social FactorsPeople with high literacy skills are more
likely to Be employed Have access to resources/wealth Have at least high school education Hold majority status Live in geographically accessible and developed
areas Use libraries, read newspapers, vote
[Rudd, Kirsch, Yamamoto, 2004]
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Health Literacy A new field of inquiry Starting point
Publication and dissemination of findings in 1990s: Literacy skills of adults
Question: What are the implications for health?
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Literacy & Health:Research FindingsLiteracy is linked to: Information / KnowledgeHealth care navigationParticipation in health promotionParticipation in disease preventionManagement of chronic diseasesMorbidity & Mortality
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IOM, 2004ETS, 2004AHRQ 2004, 2011
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Research Studies: Health OutcomesKey Finding: Patients with limited reading
skills have poorer health outcomes Less likely to engage in screening & preventive
action Less likely to have chronic disease under control Less likely to advocate for themselves More likely to be hospitalized More likely to report poor health More likely to die earlier
Conclusion: Significant differences in health outcomes based on patients’ reading skills
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Analysis: Missing PerspectiveHealth literacy studies has kept its eye
on the patientBUT: Literacy is contextual
For example:
Reader & TextSpeaker & Listener
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Health Literacy and the Focus of Attention
Recommended Action for Individuals & Communities:
Participate Find Comprehend Evaluate Use Determine
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Who carries the burden of change?
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Refocus
HealthHealthCareCare
Public Public HealthHealth
CivilCivilSocietySociety
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DemandsExpectationsProcessesCultureProfessional skills: Roles Language Skills Processes
CommerciaCommercial Sectorl Sector
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Health Literacy: Application of skills in health contexts for health tasks
Health Literacy is an interaction between skills of individuals and the demands of health systems
IOM Committee on Health Literacy, April 2004
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Consider the Demands of the Health Sector
World wide, we see an increased demand from complex health care systems & increased responsibility for individuals interacting with health care systems
Adult Literacy and Lifeskills Surveys 2003
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Consider Literacy Demands in Health Settings
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Reading
Consider the quality of health materials:
Explanations Directions Instructions
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WritingConsider expectations & materials provided Questionnaires & survey instrumentsFormsConsent & other legal documents
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Oral Exchange Listening: Consider
the speech & language of a wide variety of health professionals
Speaking: Consider what people are asked to describe and present.
Question asking: Consider power & efficacy
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MathConsider:Needed calculationsThe variety of tools providedThe words/concepts often unexplained
Range Normal Probability & Likelihood Risk
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Characteristics of Health Systems Culture of science &
medicine Language of
specialized professional groups
Perspective based on science & medicine
Hierarchies within and among professional groups
Patterned behaviors reflecting bureaucratic needs
Accepted processes for history taking, diagnosis, tests, procedures, care, consent…
Complexity of procedures, processes, institutions
Expectations related to knowledge and appropriate behaviors
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InteractionIndividual Factors Literacy &
numeracy skills Language skills Emotional state Health status Experience Background
knowledge
Health Sector Factors
Communication skills of professionals
Institutional characteristics
Procedures & processes Materials in use Assumptions
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What Happens When Words Get in the Way?
Lose your way Make errors Run out of words Retreat into
silence Cover up Limit
participation
Miss opportunities
Be assigned a passive role
Lose dignity Lose entitlements Lose rights Endanger health
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Needed Emphasis:Balancing Act
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Change Practice
“The definition of insanity is continuing to do the same thing over and over again and expecting a different result”
Variously attributed to Benjamin Franklin / Albert Einstein
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How? A Public Health LensReciprocal relationship between
persons & environment Epidemiology Health Education
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Strategy: Nothing so practical as a good theory1. Consider facilitating factors and
barriers 2. First: Identify and remove barriers3. Then: Strengthen facilitating factors
Lessons from Kurt Lewin’s Force Field Analysis
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Who? What can we do?JournalistsPublic Health OfficersHealth Care ManagersHealth Care ProfessionalsAcademics & ResearchersPolicy MakersPublic/Members of Communities
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Literacy
teachers
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Journalists Focus on the full picture [both sides of the
coin] Improve access to information
Be attentive to existing skills Draw lessons from health literacy studies
[scientific and medical cultural assumptions, jargon, complexity]
Help the diffusion process Enhance communication skills of health
researchers & professionals
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Public Health Officials and Practitioners Improve access to information
Examine and modify tools & materials Examine and modify health environments Insist on rigor [regulate production of critical texts]
Engage in participatory processes Work in and with communities Engage intended audiences in development and
reviews Build and enhance community resources
Share expertise and information Promote opportunities for analyses Engage in community based problem solving
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Research Studies: Health Materials Key Finding: Most health materials are written
at a level that far exceeds the reading skills of the average high school graduate
Conclusion: A majority of adults in most industrialized nations do not have the
literacy skills needed to use health related print materials and tools with accuracy and consistency.
Health materials & tools are poorly written & poorly designed
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Change Materials:Consider the Task and ToolsFinding: Over
1,500 studies demonstrate a mismatch between health resources and the skills of the intended audience
Suggestion: Assess information
in print, on-line, in oral presentations
Apply rigorous research
Pilot, modify, pretest with members of the intended audience
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Model Good Practice Protocols for
Development Requirements for
ease of use Rigor for user reviews Regulations Dissemination Materials as models
of communication
Critical TextsReportsBrochuresResponse to complaintsInformed consentTest resultsInstructions [e.g. discharge documents]
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Health Care Managers
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Identify and Eliminate Literacy BarriersHow literacy friendly are your healthcare settings? Are navigation tools/aides readily available?Is technology put to good use?Do words serve as barriers to access, navigation, care, consent, dignity?
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Develop Accessible Organizations Physical environment: remove
barriers to entry, navigation, services Social context: change expectations,
norms, language, rituals, & encourage dialogue
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Orient and Train Health Care Workers Normative change
Staff as ambassadors Questions welcomed
Integration of HL into orientation and training for all
Scripts & tool boxes for common interactions
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Create Shame Free Environments
Offer help to all Encourage questions & sharing concerns
Let patients know that others have
difficulties Define medical and scientific wordsExplain procedures [what is next]
Literacy and Patient Safety: Help Patients Understand. Manual for clinicians. AMA Foundation, 2007
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Institute Protocols and PoliciesInstitute rigor for critical texts Protocols for materials development Requirements for review
Scientific Lay public
Standards for assessments
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Health Professionals Enhance Professional Education
Diffusion of information: Mismatch between demands/skills
Communication skills Require and support dual language
skills [professional language and everyday language]
Encourage question asking Apply teach back
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ResearchersExpand Scope of
Inquiry 5 Aspects of
literacy Both sides of the
coin Implementation
studies
Consider the Data Interview protocols Questions Inclusion/Exclusion Validity
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Policy Makers Articulate expectations for professional
rigor related to critical health materials Consider health systems
Social and Physical Environment Processes Work Force Development
Consider Regulations
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Regulations Standards for critical texts
Processes for all vendors Review boards & articulated processes
Environmental standards Accreditation requirements for
institutions Professional training & licensing
requirements Staff orientations
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Policy – US ExamplePotential for change:
111TH CONGRESS 2d SessionCOMPILATION OF PATIENT PROTECTION AND AFFORDABLE CARE ACT
Public Law 111–274 111th CongressAn ActTo enhance citizen access to Government information and services by establishing that Government documents issued to the public must be written clearly…
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Members of Communities Identify trustworthy sources of
information Ask questions Offer feedback Expect and ask for translations [from
jargon to plain words] Advocate for change
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All: Reorientation Share wisdom & experience Make information accessible Ease entry and access Develop partnerships for action
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Urgency Health DisparitiesMorbidityMortality
EquityLiteracy skills have implications for social justice
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Attention to Disparities Distribution of literacy skills is linked to
social factors Literacy is a social determinate Match/Mismatch between demands and
skills has implications for justice & dignity Access to information Participation & Agency
In prevention and early detection For chronic disease management For informed choice [personal and policy]
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Time for Outrage
We must rely on our belief in human rights, the violation of which must provoke our indignation
Stephane HesselTime for Outrage: Indignez-vous! New York, NY: Twelve. 2011.
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Time for Action Documented: Literacy skills of adults
in industrialized nations Documented: Links between literacy
and health outcomes Documented: Mismatch between
demands and skills
Business as usual is unethical
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Possible Benefits Participation Increased agency Enhanced access Reduced
Disparities Social Justice Equity
Healthy PeopleHealthy Communities
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Cautionary NoteSocial & Behavioral
Sciences Culture Norms Resources Power Efficacy Education Persuasion ...
Health Literacy Access+ Communication Dialogue Mutual respect Foundation for
action
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