Health Literacy: From Discussion to Action May 2012

Health Literacy:From Discussion to

ActionMay 2012

Rima E. Rudd, Sc.D.Harvard School of Public Health

Boston, Massachusetts USA

Kia OraWith gratitude

Down Under ExplorationsNew Zealand JourneyPartnership Developments

LiteracyCore componentsReadingWritingSpeakingListeningCalculating [math, math concepts]

Social Meaning Identity Dignity Inclusion &

participation Civic Economic Cultural Intellectual

Dr. Rima E. Rudd - May 2012 33

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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


IOM, 2004ETS, 2004AHRQ 2004, 2011

9Dr. Rima E. Rudd - May 2012 9

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

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


Who carries the burden of change?

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Refocus

HealthHealthCareCare

Public Public HealthHealth

CivilCivilSocietySociety


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

13Dr. Rima E. Rudd - May 2012

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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


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


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




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


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


Institute Protocols and PoliciesInstitute rigor for critical texts Protocols for materials development Requirements for review

Scientific Lay public

Standards for assessments


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


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…

Dr. Rima E. Rudd - May 2012

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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


Documents

Health Literacy: From Discussion to Action May 2012