The Patient Information Forum (PIF) is calling for all health information providers to sign up to a health and digital literacy commitment charter.

By signing the charter, organisations are recognising the importance of health and digital literacy and committing to becoming ‘health literacy friendly’. 

There is a strong link between low health and digital literacy and health inequality. 

Many working age adults in the UK lack skills to understand and use information on health and wellbeing.

The call to sign the charter comes following the publication of PIF’s Health and Digital Literacy Survey results today (Monday 5 October 2020).

Jonathan Berry, National Lead for Health Literacy at NHS England and Improvement, and a member of the expert panel that drafted the recommendations, said: “Health literacy has a high impact on people’s health. 

"It can affect, among other things, how they access and use services, manage a long-term condition, take medication and live healthily. 

"It is also inextricably linked with health inequalities.”

Where has changed and what hasn't

Progress has been made since PIF last conducted the survey in 2013:

  • 60% of organisations are providing information for those with low literacy or numeracy compared to 35% in 2013
  • 58% are providing information for BAME groups, compared to 39% in 2013

However, there is more work to be done with only 13% of respondents saying their organisation had a health literacy strategy in place. 

This represented little progress from 10% in 2013.

The 2019 survey also asked how health information providers were tackling digital literacy – timely as just months later COVID-19 would accelerate the digital ambition of the NHS Long Term Plan.

Only 50% of survey respondents had considered equalities impact when introducing digital services.

To help stop this ‘digital divide’ increasing health inequalities further, PIF is recommending all organisations consider the equalities impact when introducing digital services.

Throughout the survey, a lack of recognition of the importance of health and digital literacy at an organisational level emerged as a key concern.

Sue Farrington, chair of PIF, said: “If we are serious about tackling the health inequalities revealed by the COVID-19 pandemic then it is important for all organisations producing health information to become health and digital literacy friendly. 

"Health information must be clear, consistent and accessible in all its formats if people are to make informed decisions about their health. 

"Ensuring information is inclusive, culturally appropriate and co-produced are all key elements in making content health literacy friendly.”

Recommendations

PIF, in partnership with an expert panel, has published the following recommendations to improve health and digital literacy across the UK:

  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.
  2. Organisations producing health information: Should aspire to become ‘health-literacy-friendly.’
  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.
  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 translated information: Create a central NHS repository for health literate information in English and other commonly spoken languages, to 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 consider other reasons for digital exclusion/equalities impact including access, skills, motivation when developing digital projects.

Dr Evelyn McElhinney PhD, RN Chair Health Literacy UK said: “These recommendations are reflective of the global push from expert groups such as Health Literacy UK and the many experts and global working groups; as well as organisations such as World Health Organisation. 

"Together we can continue to ensure we move to a health literate world and surveys like this improve understanding of how to achieve this.”

Click here to commit to becoming a health literacy friendly organisation.

The full report is available on request.

See also