Community Health & Learning Foundation/Prostate Cancer UK

1. Community Health & Learning Foundation/Prostate Cancer UK Health Literacy and Prostate Cancer Information: A Case Study

2. Who Are We? • Anneliese Levy, Senior Information Development Officer, Prostate Cancer UK • Jonathan Berry, Director, Community Health & Learning Foundation

3. What is Health Literacy? Health literacy implies the achievement of a level of knowledge, personal skills and confidence to take action to improve personal and community health by changing personal lifestyles and living conditions. Thus, health literacy means more than being able to read pamphlets and make appointments. By improving people’s access to health information, and their capacity to use it effectively, health literacy is critical to empowerment. World Health Organisation

4. Health Literacy – the theoretical framework Conceptual thinking about Health Literacy has developed in the last decade. Three types or levels of Health Literacy have been put forward for consideration: • Functional - Basic or core knowledge of risks and health services, compliance with prescribed actions and ability to complete or comply with systems and procedures and access, prompted, basic web based sites and information; • Interactive - Improved capacity and skills to act independently on knowledge, improved motivation and self-confidence, ability to chose between sites and web based information and to support others; • Critical - Improved individual resilience to social and economic factors and capacity to review information critically and to challenge Nutbeam D. The evolving concept of Health Literacy. Social Science and Medicine. 2008 December;67(12):2072-8.

5. Something you may not know • 43% of adults (18-65) do not have adequate literacy skills to routinely understand health information. • 61% of adults (18-65) do not have adequate numeracy skills to routinely understand health information. (LSBU Press Release – December 2012)

6. Skills for Life Skills for Life is about everyday English and practical maths. The most common definition of Skills for Life is: “The ability to read, write and speak in English and to use mathematics at a level necessary to function and progress at work and in society in general”.

7. How big is the problem?Functional literacy in England • Functional literacy = level 1 and above • Level 1 = GCSE grades D-G. Adults with skills below this level may not be able to read timetables or letters containing words with more than one syllable • 15% (=7.45 million people) of the population are below this level • Entry level 1 = expected national school curriculum level for 5-7 yrs. Adults below Entry Level 1 may not be able to write short messages to family or select floor numbers in lifts • 5% (=2.5 million people) are at this level 2011 Skills for Life Survey: Headline findings. Department of Business Innovation and Skills.

8. How big is the problem?Functional numeracy in England • Functional numeracy = entry level 3 and above • Entry Level 3 = expected national school curriculum level for ages 9-11. Adults with skills below this level may not be able to understand price labels on pre-packaged food or pay household bills • 23.7% of the population are below this level • 6.8% are at entry level 1 or below (national school curriculum for attainment at age 5-7 yrs) 2011 Skills for Life Survey: Headline findings. Department of Business Innovationand Skills.

9. Literacy: What Does It Mean? • Below Level 1 – can’t find relevant information in leaflets (approx 5m) • Below Entry 3 – can’t explain straightforward feelings/symptoms over the phone (approx 1.7m) • Below Entry 2 – can’t follow a simple letter from the surgery (approx 1m) • Skilled for Health: Making the Case (2006) Berry, J et al

10. Numeracy What Does It Mean? • Below Level 1 – can’t work out mean (average) calorie intake (approx 14m) • Below Entry 3 – measure and record height and weight on a chart (approx 6.5m) • Below Entry 2 – work out how many tablets to take in a week (approx 1.5m) • Skilled for Health: Making the Case (2006) Berry, J et al

11. The impact of LLN needs on healthPeter Oncology Paediatrics Orthopaedics Pathology Podiatry Psychiatry Radiology Rehabilitation Pharmacy Gynaecology Prosthesis Urology Physiotherapy

12. Does it Matter? • Those with the lowest skills have the worst health outcomes – premature mortality/morbidity • Therefore those with lowest skills and health literacy are the biggest users of service

13. Prostate Cancer UK Accessible resources project

14. Prostate Cancer UK Information Providing information Prostate Cancer UK provides free information on prostate cancer and prostate problems that can be tailored to the needs of each man All information is evidence-based and independently reviewed Available as printed copies and can be downloaded from www.prostatecanceruk.org

15. Prostate Cancer UK Headlines Prostate cancer facts Prostate cancer is the most common cancer in men Over 40,000 men are diagnosed with prostate cancer every year Over a quarter of a million men are living with and after prostate cancer • 1 in 9 men will get prostate cancer • More than 10,000 men die every year from prostate cancer • It’s estimated by 2030, prostate cancer will be the most common cancer [1] • [1]http://www.cancerresearchuk.org/cancer-info/cancerstats/incidence/projections/selected-cancers/selected-cancers

16. Prostate Cancer UK Who are your audience? Bob is living below the poverty line Mukeshis 89 years old Geoff has a learning disability

17. Prostate Cancer UK Deciding what to do next... Scoping research Looked for companies/organisations to work with Commissioned production of a sample easy read product Looked for ways to test the product Worked with Community Health & Learning Foundation

18. Prostate Cancer UK

19. Who • Focus Group 1 – Clients of Leicestershire Probation Service • Focus Group 2 – Clients of Leicestershire Aids Support Service

20. Key Findings - Poster Significant Understanding but • Diagrams caused confusion/provoked more questions • Risk association words/numbers– e.g. “may”, percentages – not well understood • Age risk confusing

21. Key Findings - Leaflet • Significant Understanding but • Breast Cancer section not at all understood • Not clear if only African/Caribbean and White Men are at risk

22. Key Findings - Diagrams • Not human • Looks like a “water cooler” • Not realistic • Needs simple words to explain it

23. Key Findings – Video Clip • Professional • Well understood • Right length/keeps your attention • Doesn’t tell you what to look for – signs/symptoms

24. Prostate Cancer UK Next steps… Using findings from the focus group to guide us Writing text in-house Commissioning an illustrator to draw pictures to specification Learning disability team helping us with wording Re-testing along the way

25. Prostate Cancer UK A bit of a learning curve Think about what skills and resources you already have in your organisation If working with an external company brief them in detail Test with your audience and find experts to work with