sydney medical school health literacy and how can we improve it what is the evidence ? sian smith...

SYDNEY MEDICAL SCHOOL

HEALTH LITERACY AND HOW CAN WE IMPROVE ITWhat is the evidence ?

Sian Smith PhD

[email protected]

Screening and Test Evaluation Program (STEP)Centre for Medical Psychology and Evidence-based

Decision Making (CeMPED)

SYDNEY MEDICAL SCHOOL

ACKNOWLEDGMENTS

Kirsten McCaffery

Don Nutbeam

Lyndal Trevena

Alex Barratt

Judy Simpson

WHAT IS HEALTH LITERACY?

What is health literacy?

How does it affect health?

What can we do about it?

WHAT IS LITERACY?

4

McCaffery, J., Merrifield, J. and Millican, J. (2007). Developing adult literacy: Approaches to planning, implementing and delivering literacy initiatives. Oxford, Oxfam publishing.

•Basic skills in reading and writing, ability to apply these skills to perform tasks in everyday life

• Social and cultural contexts shape literacy activities or practices

• Literacy as critical reflection enables people to have a better understanding of the social world, and their role, position and power within it.

DIFFERENT TYPES OF LITERACIES

The term ‘literacy’ has also been applied to a range of contexts including:

• Political

• Financial

• Computer

• Family

• Health

• Media

Nutbeam, D. (2009). "Defining and measuring health literacy: what can we learn from literacy studies?" International Journal of Public Health 54(5): 303-305.

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Common definitions of Health Literacy:

“... a constellation of skills, including the ability to perform basic reading and numerical skills required to function in the health care environment.”(American Medical Association 1999)

“The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.” (Institute of Medicine 2004)

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

(World Health Organisation, Nutbeam 1998)


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Processing speed

Attention

Worki

ng memory

Reasoning

Long-term memory

COGNITIVE SKILLS PSYCHOSOCIAL SKILLS

Analytical thinking

Communication

Prior knowledge and

experience

Self effic

acy

Wolf, Wilson et al (2009). Literacy and Learning in Health Care. Pediatrics 124:S275-S281.


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3 different types of health literacy:

1. Functional literacy

2. Communicative / interactive literacy

3. Critical literacy

Nutbeam, D. (2000). Health literacy as a public health goal: a challenge for contemporary health Education and communication strategies into the 21st century. Health Promotion International 15 (3): 259-267

Freebody & Luke (1990). Literacies’ programs: debates and demands in cultural contexts. Prospect 5 7-16.

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Functional health literacy – ability to apply basic literacy and numeracy skills to access and act upon health materials

Functional



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Communicative / interactive literacy – more advanced skills to obtain relevant information, derive meaning and apply new information to changing circumstances

Interactive

Functional


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Critical health literacy – most advanced, critical analysis of information to respond, adapt and control life events and situations

Functional

Interactive

Critical


The concept of health literacy has evolved from two different settings —

1.In clinical care where health literacy is seen as a “risk” factor for poor health that needs to be identified and managed in clinical care

2.In public health where health literacy is seen as an “asset” to be built – an outcome of health education and communication that supports greater empowerment in health decision making.

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Nutbeam D (2008). The evolving concept of health literacy. Soc Sci & Med 67(12): 2072-2078

HEALTH LITERACY AS A RISK

Health literacy assessment (health related reading

fluency, knowledge)

Improved clinical outcomesImproved clinical outcomesImproved clinical outcomes



fluency, knowledge)

Organisational practice sensitive to health literacy

Improved clinical outcomes

Tailored health / patient communication and education



Improved clinical outcomesImproved clinical outcomes



fluency, knowledge)





Improved access to healthcare & productive interaction with HCPs



fluency, knowledge)


Enhanced capacity for self management, improved

adherence




Improved access to healthcare and productive

interaction with HCP


adherence


adherence


Health literacy assessment (health related reading fluency,

knowledge)


Improved access to healthcare and productive interaction with

health care professionals



adherence

Improved clinical outcomes













adherence


adherence

Improved clinical outcomesImproved health outcomes

HEALTH LITERACY AS AN ASSET

Health education: knowledge, skills to promote negotiation, active involvement and decision making



Improved health literacy

Developed knowledge and capacities

Improved health literacyImproved health literacyImproved health literacy





Engagement in social Action / advocacy for

health

Changed health & behaviour practice


Active participation in health DM




Improved health outcomes, health services and clinical practice


Engagement in social action / advocacy for

health

Changed health & behaviour practice


Active participation in health DM

Improved health outcomes, health services and clinical practiceImproved health outcomes, health services and clinical practice

Nutbeam SS&M 2008

UNDERSTANDING HEALTH LITERACY

Health literacy is content and context-specific – related to age and stage of disease (Nutbeam 2009)

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A woman deciding whether to have HRTA person invited to take

part in cancer screening

A pregnant women receiving information about theswine flu vaccination

LITERACY LEVELS IN AUSTRALIA

Australian Adult Literacy and Life Skills survey 2006 (nationally rep sample adults aged 15-74 years):

46% had ‘very poor’ or ‘marginal’ literacy skills (prose and document literacy)

53% had ‘very poor’ or ‘marginal’ numeracy

60% had ‘very poor’ or ‘marginal’ health literacy

ABS 2006 concluded:Nearly ½ of Australians do not have the ‘minimum level

of literacy for coping with increasing demands of the emerging knowledge society and information economy’

ABS (2006). Adult Literacy and Life Skills Survey, Summary Results. Canberra: Australian Bureau of Statistics, Australian Government Publishing Service. Cat No. 4228.0.

Lower levels of health literacy were associated with: • Lower educational attainment

• Lower parental educational attainment

• Unemployment or not participating in the labour force

• Lower mean household incomes

• Age (decreased over the age of 40)

• Poorer self-assessed health

• Less participation in a social group or as an unpaid volunteer

• Not speaking English as a first language

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LITERACY LEVELS IN AUSTRALIA

ABS (2006). Adult Literacy and Life Skills Survey, Summary Results. Canberra: Australian Bureau of Statistics, Australian Government Publishing Service. Cat No. 4228.0.

PRESENTATION OBJECTIVES




LOW LITERACY AND POOR HEALTH

Low literacy/ health literacy linked with poor health:Higher rates of chronic illness (e.g. hypertension, heart

disease, diabetes, obesity)Higher rates of mortality (any cause)Higher hospitalisation rates and use of emergency servicesLower rates of preventive services such as screeningPoorer self management skillsGreater medication errors Lower levels of knowledge about disease and information

seeking

Dewalt DA, Berkman ND, Sheridan et al. 2004. Literacy and Health Outcomes: A Systematic Review of the Literature. Journal of General Internal Medicine 19 (12): 1228-1239

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Clinician-patient communication

Lower ratings of clinician-patient communication

Patients with low literacy often feel ashamed of their difficulties with understanding information and feel uncomfortable disclosing their literacy problems

LOW LITERACY AND POOR HEALTH

Schillinger et al. (2004). "Functional health literacy and the quality of physician-patient communication among diabetes patients." Patient Education and Counseling 52(3): 315-323.

Wolf, et al. (2007). "Patients' Shame and Attitudes Toward Discussing the Results of Literacy Screening." Journal of Health Communication: International Perspectives 12(8): 721 - 732.

PATIENT INVOLVEMENT IN DECISION MAKING

Qualitative interview study to explore involvement in decision making among patients/consumers with different levels of education and literacy.

Three key themes:

1. Understanding and experiences of involvement in health care decision making

2. Influence of the clinician-patient relationship

3. The perceived use and impact of health information (written and verbal)

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Smith SK, Trevena L, Dixon A, Nutbeam D, McCaffery KJ. (2009). Exploring patient involvement in health care decision making across different education and literacy groups: A qualitative study. Social, Science and Medicine 69 (12), 1805-1812.

1) Understanding and experiences of involvement

Stronger desire to exert some control and “ownership” over decision making process

Respected doctors expertise – responsibility to verify information

Higher Education

Stronger faith in medical profession

Patient having responsibility for the ‘last say’

Did not describe verifying the credibility of doctor’s information

Lower Education

Aware that doctors are

legally bound to

inform patients

All groups


2) Influence of clinician-patient relationship

Higher Education

Valued being treated as an intelligent patient – respect for professional status

Confident asking questions and challenging the doctor

Valued being treated ‘as a person not just a number’

Conscious of doctors behaviour –verbal and non-verbal

Avoided discordance by accepting dr’s opinion

Lower EducationAll

groups

Chose doctor/ practice setting to match their preferred style


3) Perceived function of health information

Higher Education

Seek information out of curiosity – helps to make a “rational” and “informed” decision

Evaluate the quality of information source

Search for information when diagnosed with condition or undergoing a medical procedure

Did not critically evaluate information source

Lower Education

Supported psycho-social needs:• take control• feel involved• confront situation

All groups


PRESENTATION OBJECTIVES




IMPROVING HEALTH LITERACY

Research on interventions to improve health literacy is less well developed than research on the effects of low health literacy

3 systematic reviews of health literacy interventions but findings mixed (Pignone JGIM 2005, Coulter & Ellins BMJ 2007, Clement et al PEC 2009)

However, there IS evidence to guide policy and practice now

Evidence from low literacy and general population samples


Two key areas for evidence-based action:

1. To improve health communication

2. To support clinical decision making and patient involvement


There is good quality evidence to support strategies to improve :

a. Written health information – use plain language guides

b. Prescription drug labels – use precise instructions

c. Verbal communication – use ‘teach back’ method

d. Risk communication – use natural frequencies

WRITTEN HEALTH INFORMATION

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Large font size-12pt or above

Avoid italics and capital letters

Use headings and sub-headings

Common not technical language

Glossary of medical words

Context before facts

Involve target audience in the design of materials

Interactive to engage reader

Use active voice

Simplify medical diagrams

Culturally sensitive visual illustrations

Doak, C. C., Doak, L. G. and Root, J. H. (1996). Teaching patients with low literacy skills. 2nd Ed. Philadelphia, J.B. Lippincott.

PRESCRIPTION DRUG LABELS

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US study of 400 native English speaking primary care patients, lower socio-economic group. (Davis et al Archives 2006)

50% misunderstood commonly used prescription labels

If instructions are precise and explicit understanding increased from 53% to 89% correct (Davis et al JGIM 2008)

RefMichael S. Wolf; Terry C. Davis; Patrick F. Bass; Laura M. Curtis; Lee A. Lindquist; Jennifer A. Webb; Mary V. Bocchini; Stacy Cooper Bailey; Ruth M. ParkerImproving Prescription Drug Warnings to Promote Patient ComprehensionArch Intern Med. 2010;170(1):50-56.

VERBAL COMMUNICATION

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Roter, D. L., Erby, L., Larson, S., et al. (2009). "Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning." Patient Education and Counseling 75(3): 392-397.

Medical dialogue can be challenging:

- Unfamiliar medical terms- Complex and dense language- Fast-paced monologue

VERBAL COMMUNICATION

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Roter, D. L., Erby, L., Larson, S., et al. (2009). "Oral literacy demand of prenatal genetic counseling dialogue: Predictors of learning." Patient Education and Counseling 75(3): 392-397.

Strategies to enhance understanding for patients with low literacy: “Teach-back” – “Please tell me in your own words..”

Personalise medical information (e.g. “You’ve already had a blood test and now we are talking about a more invasive test”)

More interactive dialogue – patients offered more frequent speaking turns

Shorter, less dense blocks of information

BUT...patients with higher literacy may not benefit from these techniques

RISK COMMUNICATION

5 out of 100 women will require

additional treatment

Use natural frequencies

Gigerenzer et al 1995, Feldman-Stewart et al 2000, Fagerlin et al review 2007

RISK COMMUNICATION

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5 out of 100 women will require additional

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Of 100 women who have surgery


RISK COMMUNICATION

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treatment

20% less women will required additional treatment

5% of women will required additional treatment



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treatment

20% less women will required additional treatment

5% of women will required additional treatment

OR



NOT


Two key areas for evidence based action:

1. To improve health communication

2. To support clinical decision making and patient involvement

• Broader definition of health literacy

• Fits within model of Patient Centred Care and Shared Decision Making

• Highlighted in National Health Hospital Reform Commission Report


Effective tools are available to support patient involvement and engagement in healthcare.

2 main types:

a. Patient Decision Aids

b. Intervention to promote question asking (Question

Prompt Lists (QPL) / patient coaching)

What are patient decision aids?

Information designed to help patients make an informed choice consistent with their preferences

Booklet / video/ audio / web-based form

Include evidence based information on options and outcomes

Exercises to help patients clarify values

PATIENT DECISION AIDS


Patient decision aids (DAs) are very effective.

Systematic review of 55 DA trials showed DAs:

Improve patient knowledge and understanding of

risks and benefits

Increase realistic expectations of outcomes

Reduce uncertainty in decision making

Increase consistency between patients’ values and

choice

Without increasing in patient anxiety


In some circumstances decision aids:

Increase adherence

Reduce unnecessary testing/ medical procedures

Increase quality of life

(O’Connor et al. Cochrane Review 2009)

QUESTION ASKING INTERVENTIONS

What are Question Asking Interventions?

Interventions to encourage patients to ask questions and direct the content of the consultation towards their needs and concerns

QUESTION ASKING INTERVENTIONS

Kinnersley et al Cochrane review (2007)

Question Asking Interventions

Increased question asking

Increased patient satisfaction (small increase)

No increase in anxiety

No increase in consultation length

In some studies Question Prompt Lists (QPLs)

Enabled participants to raise more ‘sensitive’ issues during the consultation (Clayton et al 2007)

INVOLVING LOW LITERACY PATIENTS

Excellent evidence that DAs and QPLs support patient involvement and improve health decision making

But very little research with low literacy and low education groups

These groups are least involved in healthcare, most difficult to get to participate, form large % patient population

However, we recently completed a randomised controlled trial (RCT) ‘lower literacy’ DA among adults with low education

FOBT SCREENING LOWER LITERACY DA

McCaffery et al NHMRC project grant, Sian Smith et al PhD. [Full project team: K McCaffery, S Smith, L Trevena, A Barratt, J Simpson, D Nutbeam]

* No formal educ qualifications, intermediate school certificate, technical/ trade qualification

Community sample: adults 55-64 years

n= 585

Lower education levels*

Control:

Govt screening booklet

FOBT screening kit

Decision Aid

FOBT screening kit

KnowledgeInformed choice

Involvement in decision makingPsychosocial outcomes

Screening behaviour (FOBT completion)

2 weeks

3 months

Trial design

Low education/ literacy DA trial: Results

DA increased adequate knowledge by 38% (56% DAs vs control 18%)

DA increased informed choice by 22% (adequate knowledge, choice consistent with attitudes 34% DA vs 12% control)

DA increased preferences for shared decision making (P=0.04)

No difference in uncertainty in decision making and anxiety - low in both groups

Acceptability of DA high (>90%)

(Smith, McCaffery et al BMJ, accepted July 2010)

CONCLUSIONS

Possible to design DAs for low education / low health literacy consumers to make informed choices

Even though this involves communicating complex medical information

More research in general and to supporting patient involvement in low health literacy groups

Although field is rapidly developing, evidence available to support action now:Written health communication

Prescription drug labels

Verbal communication

Risk communication

Supporting patient involvement

Goal for Public Health & Medicine

CLOSE THE GAP

Patient skills

+

Health system

Evidence

+

Practice

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THANK YOU

EXTRA SLIDES

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LITERACY AND EQUITY

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WHO Commission on the Social Determinants of Health (2008). Closing the gap in a generation. Geneva: World Health Organisation. http://www.who.int/social_determinants/thecommission/finalreport/en/index.html

Literacy plays a pivotal role in determining equities in health in both rich and poor countries

“Achieving greater health literacy in the population is integral to improving the health of disadvantaged populations and to tackling health inequalities” (*Coulter and Ellins 2007, BMJ)

ADVANCING HEALTH LITERACY IN AUSTRALIA

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National Health and Hospitals Reform Commission (2009). A Healthier future For All Australians

sydney medical school health literacy and how can we improve it what is the evidence ? sian smith...

Documents

basic literacy

functional literacy

practices literacy

term literacy

adult literacy

literacy initiatives

literacy studies

critical literacy nutbeam