Promoting Access to Health I nformation w hen E asy R ead is Hard

1. Promoting Access to Health Information when Easy Read is Hard Warren Oldreive - Speech and Language Therapist Mary Waight– Occupational Therapist Presentation given 20th June 2014

2. The problem • Not everyone can read • 1 in 6 people has functional literacy needs – (Jama & Dugdale 2012, DfES 2003) • NIACE (2011) – postcode lottery – some areas at greater risk of high levels • Most information about health given in form of leaflets or web sites reliant on literacy • People don’t necessarily receive the information they need to make decisions about their health and how to manage it

3. Why bother about it? • Illness and premature death (Rudd & Keller 2009) • Barrier to effective health management (Coulter & Collins 2011; Carlisle et al 2011, Marcus 2006) • Not follow medical advice and may be discharged from health management (Marcus 2006) • Not follow diet plans (Rudd & Keller 2009) • Taking medications incorrectly (Rudd & Keller 2009) Increased risk of adverse outcomes (DeWalt et al 2004) • Poor patient decision making (Brownsell et al 2012) • Poor physical health in general (Weiss et al 1992) • Confusion regarding HIV infection risks (Kalichmann et al 2000) • People may be ashamed – not admit literacy needs (Marcus 2006) A Silent Epidemic

4. Who is at most risk? • People post -stroke (Leff & Behramm 2008) • People with English as second language (Rootman 2008, Grant & Wong 2003 – “performance chasm”) • People with Dyslexia (NIACE 2011) • People with Learning Disabilities – (Lacey et al 2007, Katims 2001) • People in Prison – (Morgan and Kett – 2003) • People with poor education (Marcus 2006) • Older people (Brownsell et al 2012; NIACE 2011; Von Wagner et al 2007) • Correlations with low income and male more at risk (Von Wagner 2007)

5. What we need to do - Anna • Support access to a range of complex health information requiring independent access to ‘spoken language’. In past relied on staff reading to her and she often forgot or misremembered what she had been told. • Screening suggested patient was illiterate with functional language skills. Could find it hard to recall short paragraphs (screening revealed difference between single sentence and short paragraphs) • Verbal reasoning – some support was required to help the person understand implications of information – beyond life experience – needed to be explicit

6. Computer Aided Information(CADI) • Use of Voice Output Communication software (VOCA) to provide information – touch screen. • Program created based on series of individual ‘pages’. • Each ‘page’ is built of individual icons which activate when touched or via switch or mouse • Icons can contain: images; words, symbols, photographs – background colours can vary. • Icon output - pre-programmed for each icon – can personalise as required. Can include spoken language or video/music • 2 types of icon used : • Content – These will speak when activated • Navigation – will complete a task – move to another screen, home page – used by person to control movement • To help access – icon on lap top desktop screen leads to CADI program

7. Screen types • Title screen – First page – tells person what program they are in • Menu screen – chapters in a book – contents page • Association screens – All information on one topic • Definition screens – Define terms/concepts • Timelines – Sequences of events in a line • Generic screens – Same information (ie help) • Index screen – Library of individual books or programs (a menu that leads to menu screens for available programs)

8. CADI:Navigation

9. CADI:Showing the storySequence oftimelines

10. CADI:Cross referenceSame information accessed in different places –e.g. foster care Timeline Menu In context Quick reference

11. CADI:Index– library of 4 separate programs – accessed from desk top screen About the baby Playing with your baby Looking after a baby Child development

12. CADI Review - Strengths • Removed literacy need • Chunked language in to smaller chunks • Potential to personalise images, language used • Ability to repeatedly access content icons (ie hear bits several times) to help language processing • Choose path and select information as required – easy to locate what needed • Split content and navigation – reduces errors • Consistency in interface (use one program can use them all) • On computer so preferred • Multi-media inclusion • Flexibility in design and access • Could update Index as required to keep information current • No need to access via menus

13. CADI Review – Limitations • Needs computer to work – currently limited access and sharing • May not own a computer. Could only borrow or locate at a general location: library/ day centre • May have access to web accessible phones • Time taken to develop packages • Costs of software used • As computer based may not always be available when required by person – not as useful as web based system • Security concerns – if computer lost/stolen/ access at general locations • May not have access when information is needed.

14. Future directions – the virtual world • Requirement for ‘E-health literacy’ – (Norman and Skinner 2006). • Web based resources have great potential to support people with language, literacy, memory and reasoning needs. Will require modification – concern that this no occurring widely. Limited research being undertaken but no general consensus or approach. • Expectation of information access via health and charity based websites and away from face to face contacts – Power of Information (DoH 2012) • Requirement to develop web resource interfaces that are accessible to people with literacy and/or language needs. • Guidelines in their infancy e.g. – ‘Web Content Accessibility Guidelines’ 2008, ‘Information for all’ 2009

15. Critique of existing web resources • Based mainly on Easy read – transfer ideas to internet = Retain literacy requirement. All sites must include possibility to enhance size and colours of text (for figure – ground enhancement) and advice on which fonts to avoid. • Where language is spoken via audio and/or video the duration can be too long – may not meet language needs of people with these extra cognitive needs. No ability to chunk language or locate and find specific sections. • Navigation can be challenging within sites and there is only limited consistency between sites. Many features need to be activated within sites or replay each time (ie each time return to a screen the video plays). Cannot repeat specific linguistic chunks or control explicitly as you can in CADI to help people locate specifics easily. • Can be hard to access sites in the first place – Some progress – ‘Dobsons Choice’ is an existing search engine • No distinction between content and navigation icons – touching content icons once can activate. This may increase errors and frustration.

16. Conclusions • Health illiteracy is a ‘silent epidemic’ that must be considered. • Philosophy - Need to offer health information is a paramount – not poor relative that gets in the way of proper input! • We need to consider: literacy as well as related elements: language; reasoning, memory to build resources that help us provide accessible and valuable information. • We need pathways and review mechanisms • We need to make web resources accessible to minimise the impact of any literacy needs and offer same possibilities. • We need combined research driven approach • Flexible info may cost more in short term, benefits likely to outweigh costs … its worth it. We need to argue the case….

17. Further information • Blog reference – Ucan inform – at Wordpress.com waightoldreive • Oldreive W & Waight M – 2013 - A structured process of accessible information provision – Tizard Review – Vol 18 (1) pp 5-16 • Oldreive W & Waight – 2012 - Information Need it but can’t read it: The use of Computer AideD Information – Communication Matters – Vol 26 (1) pp34-36 • Oldreive W, Moore N & Waight M – 2012 - Steps to Independence: Supporting every day decision making with computers – Journal of Assistive Technology – Vol 6 (1) pp 53-62

18. References Brownsell S, Blackburn S & Hawley M – 2012 – User requirements for an ICT – based system to provide care, support and information access for older people in the community – Journal of Assistive Technology – Vol 6 (1) pp 5-24 Carlisle A; Jacobson K, Francesco L & Parker R – 2011 – Health Literacy in the Pharmacy: Practical strategies to improve communication with patients – Pharmacy and Therapeutics – Vol 36 (9) pp 576-589 Coulter A & Collins A – 2011- Making shared decision making a reality: no decision about me without me –The Kings Fund DeWalt D, Berkman N, Sheridan S, Lohr K, Pignone M – 2004 – Literacy and Health outcomes: A systematic review of the literature – Journal of General Internal Medicine – Vol 19 pp1228-1239 Jama D & Dugdale G – 2012 – Literacy the state of the nation: A picture of literacy in the UK today National Literacy trust- (originally 2010 – last updated 10 January 2012) Marcus E – 2006 – The silent epidemic – The health effects of illiteracy – The New England Journal of Medicine – 335 pp339-341 Morgan M & Kett M – 2003 – The prison adult literacy survey: results and implications – Irish Prison Service – Dublin National Institute of Adult Continuing Education (NIACE) – 2011 – Work Society and Life long Learning: Report of the inquiry into adult literacy in England – NIACE – Leicester – UK Rudd R & Keller D – 2009 – Health literacy: New developments and research – Journal of Communication in Healthcare – Vol 2 (3) pp240-257.