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  • Health and Digital Literacy Survey 2019/2020 (Patient Information Forum)

    PatientSafetyLearning Team
    • UK
    • Data, research and analysis
    • Pre-existing
    • Original author
    • No
    • Patient Information Forum
    • 05/10/20
    • Everyone


    Many working age adults in the UK lack skills to understand and use information on health and wellbeing. Health literacy skills are lacking in 43% of the population and numeracy skills in 61%. This gap between skills and the complexity of health information leaves millions excluded from making informed decisions about their health, compounding existing health inequalities.

    COVID-19 accelerated the digital ambition of the NHS Long Term Plan. In the four weeks to 12 April 2020, 71% of routine GP consultations were delivered remotely, according to the Office for National Statistics (ONS). Secretary of State for Health Matt Hancock has said he wants this trend to continue and it is likely remote consultations will be part of the new normal. However, nine million people lack digital skills, 8% are not connected and 66% with online access do not use the internet or digital tools to support their health.

    In 2019 there was already concern that people with low health literacy and those without access, skills or motivation to use digital tools would be left behind in a digital first NHS. Late in 2019 the Patient Information Forum (PIF) ran a survey of its membership about their action on health and digital literacy. Its findings and recommendations have been made more urgent by the inequalities exposed by the pandemic.


    The analyses of the survey data informed a number of recommendations made by the PIF.


    1. UK National Health strategies Incorporate health and digital literacy into health strategies of the four nations of the UK as a key enabler of shared decision making, supported self-care and self management and reducing health inequality.

    The strategies should encourage and support the development of ‘health literacy friendly’ organisations.

    2. Organisations producing health information should aspire to become ‘health-literacy friendly.’

    Health-literacy friendly organisations make it easier for people to navigate, understand, and use information and services to take care of their health. They:

    • use clear communication (verbal, written, digital)
    • create easy to use digital tools/websites, printed information and premises
    • involve people in the development of information as routine and invite feedback
    • train staff in health literacy.

    3. NICE

    Develop Guidelines on health and digital literacy to drive change and provide an evidence base. Ensure health and digital literacy is recognised in new and updated guidelines, with particular reference to shared decision-making.

    4. Shared decision-making

    Require the provision of ‘health-literacy friendly’ patient information (that conforms to standards) in planned national standards and guidelines on shared decision-making.

    5. PIF TICK

    Develop specified UK standards on health literacy within the PIF TICK criteria related to:

    • Reading age, use of plain language, and simpler language summaries to support people with lower literacy
    • Numeracy age of material, use of natural numbers and icon arrays, fact boxes
    • User involvement (co-production) in the development and testing of material.
    • Availability of translated materials
    • Recognised web accessibility standards WCAG 2.1 (see box on page 10 of report)
    • Standards desirable for first 12 months with review after a year and a timetable to become mandatory

    6. Good practice guidance

    PIF to develop guide on ‘How to Produce Health Literate Patient Information’ and promote existing resources, knowledge and tools on health and digital literacy.

    Develop a health literacy checklist for information producers.

    7. NHS repository for health literate and translated information

    Create a central NHS repository for health literate information in English and other commonly spoken languages to help reduce health inequality in BAME groups exposed by COVID-19. Make NHS App and other national projects available in commonly spoken languages.

    8. Digital health literacy

    Raise awareness of the WHO definition of digital health literacy and the personal skills required.

    9. Community skills improvement

    Support motivation and skills improvement through a partnership promoting and signposting health literate information in all formats to public libraries, schools, prisons, pharmacies and other community based support.

    10. Equalities impact of digital tools

    All organisations should implement the Accessible Information Standard and, when developing digital projects, consider other reasons for digital exclusion and equalities impact including access, skills and motivation.

    You can read the key findings of the survey and view the data by following the below link to the PIF report.

    Health and Digital Literacy Survey 2019/2020 (Patient Information Forum) https://pifonline.org.uk/download/file/498/
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