Improving Health Literacy: what we know, what we don’t know AND what could make a difference Professor Kirsten McCaffery Sydney School of Public Health kirsten.mccaffery@sydney.edu.au @KirstenMcCaffer The University of Sydney Page 1
2 What we know: Health Literacy Demand Individual from health health literacy literacy environment The University of Sydney Page 2
3 Low health literacy is common (ABS 2006) Individual HL 60% ‘inadequate’ HL The University of Sydney Page 3
4 PROBLEM! HL Individual HL environment 60% 60-95% of ‘inadequate’ health info HL too complex The University of Sydney Page 4
HEALTH LITERACY ENVIRONMENT Systematic review: 126 written info CKD (Morony et al 2015) • Readability (Flesh-Kincaid) • Lexile score (complexity and demand) Results • 77% beyond average recommended lexile score • 66% beyond average readability score (grade 8 = 13-14 yo) • 95% beyond level for low literacy popn (grade 5 = 10 yo) The University of Sydney Page 5
Health literacy environment matters…. 24-36 hrs after ED discharge: 80% of patients did not understand home care instructions (Engels et al 2012). 40-80% of health information given by HCPs forgotten immediately (review by Kessels et al 2013). Review of medication errors found 19-59% of patients make errors – highest in patients with low literacy, elderly and with young children (Mira et al 2015). The University of Sydney Page 6
Health literacy costs billions….. • UK HL accounts for 3-5% of ALL healthcare costs –AUD$ 5-8 billion per year (2013-14). • Australia: increased out of pocket costs $143-$7798 per person/ year. • Cost to health and quality of life is huge The University of Sydney Page 7
What can we do about health literacy? The University of Sydney Page 8
Use evidence-based interventions that work The University of Sydney Page 9
Written health information Engage with Prescription education sector Drug labels Improved Health Literacy Verbal Shared Decision communic- Making ation Risk communic- ation The University of Sydney Page 10
Written health information Engage with Prescription education sector Drug labels Improved Health Literacy Verbal Shared Decision communic- Making ation Risk communic- ation The University of Sydney Page 11
Written health information Engage with Prescription education sector Drug labels Improved Health Literacy Verbal Shared Decision communic- Making ation Risk communic- ation The University of Sydney Page 12
Written health information Engage with Prescription education sector Drug labels Improved Health Literacy Verbal Shared Decision communic- Making ation Risk communic- ation The University of Sydney Page 13
Written health information Engage with Prescription education sector Drug labels Improved Health Literacy Verbal Shared Decision communic- Making ation Risk communic- ation The University of Sydney Page 14
Written health information Engage with Prescription education sector Drug labels Improved Health Literacy Verbal Shared Decision communic- Making ation Risk communic- ation The University of Sydney Page 15
Written health information Engage with Prescription education sector Drug labels Improved Health Literacy Verbal Shared Decision communic- Making ation Risk communic- ation The University of Sydney Page 16
Improving written health information Use of plain language improves understanding ( Syst Rev: Sheridan • et al 2011, 2013) Eg. CDC https://www.cdc.gov/healthliteracy/pdf/Simply_Put.pdf Information needs to be actionable ie. clear what steps should be • taken Pay attention to images • ‘Avoid salty foods’ ‘Eat a palm size piece of meat’ The University of Sydney Page 17
Example: Increasing readability of discharge summaries (Choudry et al 2018) Prospective observational study n=1072 patients Reduced reading level of DS from grade 10 to grade 8 Results: Patient calls after discharge reduced 21.9% to 9% P<0.0001 Readmission reduced by 50% per 100 pts discharged (P=0.002) Calling and readmission for pain control decreased by >50%, (P<0.02). Enhancing HL simultaneously reduced burden on health staff The University of Sydney Page 18
Prescription drug labels The University of Sydney Page 19
Prescription drug labels If instructions are precise and explicit drug label errors reduced from 50% to 11% lower literacy populations (Davies et al 2008 ) YES x NO take 1 at 6am and 1 take twice daily at 6pm every day OR OR take every 12 take 1 with hours breakfast and 1 with dinner The University of Sydney Page 20
21 Verbal communication: Use Teach Back The University of Sydney Page 21
22 Verbal communication: Use Teach Back Patients forget 40-80% of what clinicians say (Ley, 1998; Kessels, 2013) Teach-back HCP asks patient to explain in own words what they need to know or do, in a caring way to ensure accurate understanding Clinicians do not use it in practice without specific training The University of Sydney Page 22
RISK COMMUNICATION: use format that improve understanding (Trevena et al 2013) ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● 5 out of 100 women will experience side effects or 5%.... The University of Sydney Page 23
RISK COMMUNICATION: use format that improve understanding (Trevena et al 2013) ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● 20% less women will NOT experience side effects 100 90 80 70 60 50 40 30 20 5 out of 100 women will 10 0 experience side effects or 5%.... The University of Sydney Page 24
Shared Decision Making The University of Sydney Page 25
Shared Decision Making In >100 RCTs SDM using DA improves pt outcomes: Knowledge, risk perceptions, uncertainty Participation in DM; ‘positive’ Dr-patient communication Impact may be greatest in lower literacy/ socially disadvantaged patients Stacy D et al Cochrane Review PtDAs (2017); Durand et al PLOS one (2014) The University of Sydney Page 26
Engage with the education sector Adult and community based education e.g. TAFE Health Literacy Program (McCaffery et al HLRP; Muscat et al HLRP accepted ) ; AMEP; Skilled for Health (UK). Schools The University of Sydney Page 27
How well are we doing in Australia? Use of plain language materials X X Prescription drug labels X Teach-back X Risk communication formats X Shared decision making The University of Sydney Page 28
Behaviour change required…. The University of Sydney Page 29
Health Literacy Hub community of practice The University of Sydney Page 30
Sydney Health Health Literacy Lab Literacy Hub research community of group practice The University of Sydney Page 31
Sydney Health Literacy Lab: a behavioural science and communication research group Director: Prof Kirsten McCaffery Deputy Director: A/Prof Jesse Jansen Westmead Lead: Dr Danielle Muscat The University of Sydney Page 32
Sydney Health Literacy Lab: Our work seeks to build partnerships and educational opportunities in health literacy research and practice: 1. Understand the diverse needs of the community and health care services 2. Develop and test new knowledge, skills or solutions to address those needs 3. Help implement new strategies to improve health literacy effectively and sustainably in the community and health system AIM: to create a body of evidence to reduce the burden of low health literacy that can translate into practice The University of Sydney Page 33
Sydney Health Literacy Lab Dr Danielle Muscat, Westmead Health Literacy Lab Lead The University of Sydney Page 34
The Health Literacy Lab: exemplar collaborative research projects 1. RCT of a TAFE health literacy education program (McCaffery et al 2018 accepted ) 2. Health Direct & SHLLab trial of Teach back (Morony et al 2018) 3. Parenting Plus HL program (Danielle Muscat, Lyn Trunchon, Dipti Zacchariah, Anne Harris et al) 4. CKD HL App (Danielle Muscat, Angela Webster et al) 5. Diabetes App with Western Sydney Diabetes (Julie Ayre, Carissa Bonner, Glen Maberly et al) The University of Sydney Page 35
36 1. TAFE Health Literacy program trial – Partners: TAFE, CEC, NSW Health, NPS MedicineWise, USYD – Health literacy education program – 23 TAFE sites, 308 low literacy students – Guided lesson plan and resources • Teaching manual • Worksheets / exercises • Teaching resources The University of Sydney Page 36
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