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Health and digital literacy – have your say

Sophie Randall

Sophie Randall, Head of Partnership and Strategy Patient Information Forum at PIF, writes about health and digital literacy across the health and care systems.

  • Digital health and care
  • Person-centred care

People with lower health literacy have higher rates of ill-health and premature death than the general population. Low health literacy is a key determinant of the health inequality the NHS plan has pledged to reduce.

At the Patient Information Forum we carried out a survey in 2013 to ask what organisations were doing on health literacy and found only 1 in 10 had a formal policy. This year we are repeating the survey to discover what has changed.

The key elements of personalised care: shared decision-making, social prescribing, personal health budgets, and improvements in patient activation require patients to be informed and motivated to take part in their healthcare.

Health literacy has been defined by WHO as ‘The personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health.’

An alternative definition is being developed in the US, ‘Health literacy occurs when a society provides accurate health information and services that people can easily find, understand and use to inform their decisions and actions.’

There is no doubt that health literacy is a two-sided issue – it is the skills of the population versus the complexity of health information developed by the NHS, the pharmaceutical industry, health charities and medical societies.

The average literacy levels of working age adults are those expected of 11 to 14-year olds, but research1 has found the level of health information produced is set at 14-16 years. Numeracy levels are lower, between 9-11 years, but materials are at the level of an 11-14-year-old.

This leaves between 43% and 61% of working age adults in England excluded from the information they need to make informed decisions about their health.

PIF’s own market research found 32% of adults with a long-term condition found it difficult to access information on their condition, 20% lacked information to have a meaningful conversation with their doctor and 30% felt their views weren’t taken seriously by health professionals.

It is hard to change the skills and confidence of people with low health literacy but easier to make sure health information is pitched at the average skill level of the population. Co-creation with a diverse range of stakeholders is part of the solution.

Lack of resources, fear of ‘dumbing down’ and ‘compromising accuracy’ are reasons given for dropping the jargon.  PIF’s new survey aims to find out what organisations are doing to meet the challenge and what support and guidance they need from the centre.

The NHS plan also puts a huge emphasis on digital health. For the first time, our survey of information producers asks about digital literacy. PIF is concerned that those with low health literacy and without digital skills or access will be doubly disadvantaged when it comes to managing their health.

Have your say and take part in our survey today  Early findings will be presented in a webinar hosted by TextHelp  on Thursday 24th October at 12:30 pm To register for the webinar, please click here

PIF is running a training workshop on health literacy and health information on 27 November 2019 in London, for details please click here