Shared Decision Making and Health Literacy · 2019-07-03 · Shared Decision Making and Health Literacy Consumer Enablement Spotlight Series, 11 June 2019 Dr Danielle Muscat ... McCafferyet

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Shared Decision Making and Health Literacy

Consumer Enablement Spotlight Series, 11 June 2019

Dr Danielle Muscat Post-Doctoral Research Fellow Sydney Health Literacy Lab / WSLHD Health Literacy HubEmail: [email protected]


What is health literacy?

– >17 definitions of health literacy; >12 conceptual models1

– WHO definition: “the ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”.2

Image created by Flatart from Noun Project


Why do we care about health literacy?

– The only nationally representative survey to directly measure health literacy skills in Australia found that: – 60% of Australian adults lack functional health literacy skills (e.g.

interpreting medicine labels)3

– Impact on health: hospitalisations, emergency use, screening and preventative behaviours, overall health status and mortality4

– Social gradient: lower levels of health literacy more common among the socially and economically disadvantaged (e.g. older adults, CALD groups)3


The two sides of health literacy

Image created by Australian Commission on Safety and Quality in Healthcare


Risk v asset models of health literacy

Risk approach5

• Health literacy as an individual deficit / static patient characteristic.

• Poor health literacy is viewed as a risk that leads to poorer health outcomes and reduced compliance with health care advice.

• Efforts to improve health literacy tend to be goal-directed, seeking to mitigate the related risks to achieve improved clinical outcomes. E.g. • Simplification of health information

and advice• Modifications to service

organisation.


Risk v asset models of health literacy

Risk approach5 Asset approach5

• Health literacy as an individual deficit / static patient characteristic.

• Poor health literacy is viewed as a risk that leads to poorer health outcomes and reduced compliance with health care advice.

• Efforts to improve health literacy tend to be goal-directed, seeking to mitigate the related risks to achieve improved clinical outcomes. E.g. • Simplification of health information

and advice• Modifications to service

organisation.

• Health literacy as a personal asset / modifiable health determinant which offers consumers greater autonomy and control over healthcare decisions.

• Health literacy is subject to change and improvement.

• Interventions seek to build skills and capacity.


Involving patients in decisions about their health: Focusing on demands and complexity



Reducing demands and complexity



Demands and complexity – Early findings

– Readability and cultural sensitivity of web-based patient decision aids for cancer screening and treatment: a systematic review – 20076

– Evaluated 23 decision aids • 74% (n = 17) written at the grade 10 – 13• 22% (n = 5) at the grade 9• 4% (n = 1) at the grade 8 level

Image created by Iconcheese from Noun Project

Recommended Grade level for adults with lower literacy = Grade 5


Demands and complexity – Early findings

– Addressing health literacy in patient decision aids - 20137

– 97 trials of patient decision aids – Only 3 addressed the needs of

lower literacy or education audiences

– In 90% of the trials, neither the readability of the decision-aid or the health literacy of the audience were reported

Image created by Iconcheese from Noun Project


Demands and complexity – Solutions


Demands and complexity - Solutions

– Readability scores

– Patient Education Materials Assessment Tool (PEMAT)

– Suitability Assessment of Materials (SAM)

– Universal Precautions Toolkit


Demands and complexity – Solutions

– Toolkit to Make Written Materials Clear and Effective

– Health Literacy Online: A Guide for Simplifying the User Experience

– Simply Put: A guide for creating easy-to-understand materials

– Everyday Words for Public Health Communication


healthliteracyhub.org.au


Demands and complexity – Outcomes

– Developed a decision aid for adults with low education and literacy to support informed choice and involvement in decisions about screening for bowel cancer8.

• Reduced text• Glossary of medical terms • Active voice

• Lay language • Illustrations • Simplified medical diagrams


Demands and complexity – Outcomes

– Evaluated in a randomised controlled of 572 adults aged between 55 and 64.8

– Compared decision-aid to standard information about the Australian bowel cancer screening program.

– Decision aid increased knowledge and informed choice mong adults with low levels of literacy and education (without increasing anxiety or worry) compared to control.


Reducing demands and complexity – Verbal communication

Image 1: Alam et al. BMC Medical Informatics and Decision Making (2016) 16:147Image 2: https://shareddecisions.mayoclinic.org/


Reducing demands and complexity – verbal communication

– Teachback – Iteratively asking the patient to summarise or restate the

important points in a consultation using their own words

Teachback.org


Involving patients in decisions about their health: Focusing skills and abilities


Preparing patients to be involved

– Many patients currently feel that they can't participate in shared decision making.9– Irrespective of literacy / education

Image created by shashank singh from Noun Project


Preparing patients to be involved9

• Inform patients about shared decision making

• Explain that there are two experts in the clinical encounter – patient and clinician

• Challenge attitudes that there are right and wrong decisions

• Redefine perceptions of a good patient and reassure patients that participation will not result in retribution

• Promote social acceptability of this role

• Build patients' belief in their ability to take part.

Image created by IYIKON from Noun Project

“

”


Preparing patients to be involved9

• Inform patients about shared decision making

• Explain that there are two experts in the clinical encounter

• Challenge attitudes that there are right and wrong decisions

• Redefine perceptions of a good patient and reassure patients that participation will not result in retribution

• Promote social acceptability of this role

• Build patients' belief in their ability to take part.

Image created by IYIKON from Noun Project

“

”


Health literacy: Skills and abilities

– Three-level hierarchy of health literacy skill development10

Functional health literacy

Communicative health literacy

Critical health literacy







Basic-level skills that are sufficient for individuals to obtain health information, and apply knowledge to a range of prescribed activities.







More advanced literacy skills which can be used to participate actively in everyday situations, extract health information and derive meaning from different forms of health communication, and apply this to changing circumstances to make decisions about their health.







Most advanced cognitive and social skills needed to critically assess the applicability of health information to personal situations or its reliability, and obtain and use information to exert greater control over life events and situations


Health literacy: an asset approach

– At different times in the shared decision-making process, all levels of health literacy skills (functional, communicative and critical) are required for engagement with healthcare professionals.11,12



– Health literacy skills for shared decision-making11,12




Empowerment &Decision-making

e.g. describing symptoms, asking clarification questions, reading a decision aid








e.g. asking about options, benefits and harms








e.g. integrating knowledge with preferences to make an informed decision



– Health literacy skills for shared decision-making can be improved through education and training

– TAFE Living Literacy Program13,14

– Informed Health Choices15

– Parenting Plus – SUCCESS


Platforms for developing health literacy skills

Adult education Schools Digital platforms


Summary



References

1. Sørensen, K., Van Den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., … Mensing, M. (2012). Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health, 12, 80–80. https://doi.org/10.1186/1471-2458-12-80

2. Nutbeam, D. (1998). Health promotion glossary. Health Promotion International, 13(4), 349-364.3. Australian Bureau of Statistics. Adult Literacy and Life Skills Survey, Summary Results, Australia,

2008.4. Berkman, N., Sheridan, S., Donahue, K., Halpern, D., Crotty, K., & Berkman, N. (2011). Low health

literacy and health outcomes: an updated systematic review. Annals of Internal Medicine, 155(2), 97–107. https://doi.org/10.7326/0003-4819-155-2-201107190-00005

5. Nutbeam, D. (2008). The evolving concept of health literacy. Social Science & Medicine, 67(12), 2072–2078. https://doi.org/10.1016/j.socscimed.2008.09.050

6. Thomson, M., & Hoffman-Goetz, L. (2007). Readability and cultural sensitivity of web-based patient decision aids for cancer screening and treatment: A systematic review. Medical Informatics and the Internet in Medicine, 32(4), 263–286. https://doi.org/10.1080/14639230701780408

7. McCaffery, K., Holmes-Rovner, M., Smith, S., Rovner, D., Nutbeam, D., Clayman, M., … Sheridan, S. L. (2013). Addressing health literacy in patient decision aids. BMC Medical Informatics and Decision Making, 13(Suppl 2), S10–S10. https://doi.org/10.1186/1472-6947-13-S2-S10

8. Smith, S., Trevena, L., Simpson, J., Barratt, A., Nutbeam, D., & Mccaffery, K. (2010). A decision aid to support informed choices about bowel cancer screening among adults with low education: randomised controlled trial. British Medical Journal, 341(7780), c5370. https://doi.org/10.1136/bmj.c5370


References 9. Joseph-Williams, N., Edwards, A., Elwyn, G., & Joseph-Williams, N. (2014). Power imbalance

prevents shared decision making. BMJ (British Medical Journal), 348(7960), 17–17. http://search.proquest.com/docview/1558987392/

10. 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.

11. Muscat, D., Shepherd, H., Nutbeam, D., Morony, S., Smith, S., Dhillon, H., … Mccaffery, K. (2017). Developing Verbal Health Literacy with Adult Learners Through Training in Shared Decision-Making. Health Literacy Research and Practice, 1(4), 257–268. https://doi.org/10.3928/24748307-20171208-02

12. Smith, S., Nutbeam, D., & McCaffery, K. (2013). Insights into the concept and measurement of health literacy from a study of shared decision-making in a low literacy population. J Health Psych, 18(8), 1011-1022.

13. McCaffery et al., 2016. Evaluation of an Australian health literacy training program for socially disadvantaged adults attending basic education classes: study protocol for a cluster randomisedcontrolled trial. BMC Public Health 27;16:454

14. Muscat, D.M., Morony, S., Hayen, A., Trevena, L., Shepherd, H.L., Smith, S.K., Dhillon, H., Luxford, K., Nutbeam, D., & McCaffery, K. Skills for shared decision-making: evaluation of a health literacy program for lower literacy consumers. Health Literacy Research and Practice. 2019. Accepted March 2019.

15. Nsangi, A., Semakula, D., Oxman, A. D., Austvoll-Dahlgren, A., Oxman M., Rosenbaum, S., … Sewankambo, N. K. (2017). Effects of the Informed Health Choices primary school intervention on the ability of children in Uganda to assess the reliability of claims about treatment effects: A cluster-randomised controlled trial. The Lancet, 390, 374–388. DOI: 10.1016/S0140-6736(17)31226-6


Danielle M Muscatdanielle.muscat@sydney.edu.auSydneyhealthliteracylab.org.au

@Dmuscat92

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Shared Decision Making and Health Literacy · 2019-07-03 · Shared Decision Making and Health Literacy Consumer Enablement Spotlight Series, 11 June 2019 Dr Danielle Muscat ... McCafferyet