Under the radar Poor health literacy as a predictor of ill-health - Sue Lacey Bryant (Keynote)

Editor's Notes

• #1 On a mission to bring Health Literacy to the front of your mind amidst an exciting and jampacked Conference programme, thank you for inviting me to join you. Poor health literacy is a predictor of ill-health, yet often it goes Undetected, and its impact is both Underestimated and Unaddressed. So my mission today is to lift health literacy Out from Under the radar - and to consider actions we can take to improve levels of health literacy. While I’m on this slide - you can see the QR code through which to submit questions, which I’ll repeat once or twice through the presentation – and you have the link in the programme.
• #2 Travelling to Sheffield t occurred to me that we take our literacy for granted as we make our way through the station - and through life, day-to- day. Functional literacy - meaning a person’s reading and writing skills are sufficient to cope in their everyday life, for instance to read signs, is our starting point for health literacy. ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------ Source of definition: https://alt.org.uk/wp-content/uploads/2023/12/Adult-Literacy-in-the-UK-Basic-Primer-1.pdf
• #3 As information professionals we know that our fellow academics, educators, practitioners are all short of time – and so we are wise to cut to the quick and so I’ll start this morning with the Bottom Line, the three top messages on which I’ll expand today. I’ll share some of the evidence on the impact of low levels of health literacy and touch on the link with health inequalities. I want to talk about the Information Environment itself - including health misinformation I’ll signpost the work of the National Health and Digital Literacy Partnership which I chair - and the experience of the Complete Care Communities Programme for which I am a mentor – and aim to land this session by sharing practical suggestions for you to draw on as you return to work.
• #4 READ The most important take-away is that we can do something about health literacy, how far our organisations are health literacy friendly, as well as improving the health literacy of individuals
• #5 Starting with what we know about adult-literacy, the UK faces a huge challenge. READ the slide.
• #6 Many of us are not Conscious of ever having met anyone who can’t read, and that’s because it stays under the radar. READ slide
• #7 Thinking about the journey we must take, as individuals, from literacy to health literacy - you can see here the skillsets on which we need to build. Functional literacy: the skills of reading, writing and meaning-making remain the starting point. And as more health information is shared via digital platforms, remember that 1 in 20 people remain without internet access at home, and that’s 1 in 5 for people aged over 75 READ SLIDE And to note here, that the ability to Read is Not an indicator of functional Health Literacy: they may still struggle to understand and critically assess health information. My thanks to Ruth Carlyle, a former colleague for allowing me to use and adapt her slide. ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- https://www.ofcom.org.uk/siteassets/resources/documents/research-and-data/online-research/online-nation/2025/online-nations-report-2025.pdf?v=409837
• #8 How does poor health literacy manifest? There are different ways of looking at the scale of the challenge. These data from a population study, part of the annual British Social Attitudes survey in 2018, gives us a national baseline (READ) Moreover, these numbers are certainly an underestimate because this was conducted via a Written questionnaire – which some people will have struggled to complete. --------------------------------------------------------- SOURCE: Simpson, R.M. et al, Health literacy levels of British adults: a cross-sectional survey using two domains of the Health Literacy Questionnaire, BMC Public Health, 2020 https://pmc.ncbi.nlm.nih.gov/articles/PMC7708169/
• #9 Looking at the problem through another lens, Gill Rowlands et al looked at the readability of a sample of health information materials to assess the literacy and numeracy skills required to understand them. READ Think about how many medical conditions require an understanding of numbers – diabetes, thyroid conditions and many more, And when it comes to medication, there are obvious risks where people cannot understand the labels and simple instructions on a medicine bottle. Incidentally, a couple of years ago a health library manager told me she had just completed an audit of the hospital’s health information for patients, to find the reading age of these had crept up to age 18! So, we know that there is a significant mismatch between population health literacy and the complexity of health information. For genuine shared decision making, people may need to be supported to make decisions that are right for them, through discussions that take into account their health literacy skills.
• #10 Here is the geodata that illustrates, if you like, the geography of the health literacy challenge. This is a tool commissioned by the national NHS knowledge and library services team at NHS England from the University of Southampton. READ SLIDE It shows considerable variation across England. People living in the areas of greatest socioeconomic disadvantage and those from Black and Asian communities have the lowest levels of health literacy. ---------------------------------------------- SOURCE: The estimates use survey data from the latest Skills for life survey (2011), 2021 census data and the 2019 index of deprivation, and based on a study by Rowlands et al in 2015
• #11 I like the Canberra Health Hub, which is very person-centred, focused on the needs of individuals READ Slide
• #12 There is a strong evidence base for the detrimental impact of poor health literacy on individuals. READ slide
• #13 Poor health literacy is associated with poor health outcomes. READ Tackling inequalities is high on the agenda for health and care services And, while improving health literacy Alone will not achieve health equity, my proposition is that it is critical, and needs to be incorporated as a central aspect of initiatives to address inequalities. ------------------------------------------------------------------------------------------------------------------------------------------------------------ Source: PHE, Sept 2015. https://assets.publishing.service.gov.uk/media/5a80b62d40f0b62302695133/4b_Health_Literacy-Briefing.pdf
• #14 I have volunteered with the Complete Care Community Programme for a couple of years. And it was through the process of the evaluation of the programme that Health Literacy emerged as an important factor – not that anyone would have used that terminology. READ slide Figure 1 shows the 3 themes that emerged: practical issues for patients abut how to access services, a need for greater knowledge and awareness amongst healthcare professionals, plus a need for staff to have a better understanding of the circumstances of individuals.
• #15 People with low levels of health literacy find it more difficult to access appropriate health services (something which lots of us may struggle with) - which is why the NHS uses posters like these Patients with limited health literacy make more use of A&E services and generally enter the health system when they are sicker And once at the hospital they Have longer in-patient stays Have less effective communication with health and social care staff Are less likely to engage in active discussion about their health options, possibly leading to their health needs being ‘hidden’ ----------------------------------------------------------------------------------------------------------------------------------------------------------------------- Source: https://assets.publishing.service.gov.uk/media/5a80b62d40f0b62302695133/4b_Health_Literacy-Briefing.pdf
• #16 For patients, health issues often involve additional expenses - prescription charges, travel costs to and from appointments, parking, as well as loss of earnings. Along with the awful burden of health literacy on individuals, it is also a significant burden on hospitals and the health systems In every sense, Health Literacy is an agenda we cannot afford to ignore. It is good to see that NHS Providers, which is the membership organisation for NHS hospital, mental health, community and ambulance services, is alert to the issues, and we also see NHS England placing more emphasis on health literacy. Of course, the health literacy of individuals is influenced by the context in which they live and are managing their health
• #17 I want to bring in the case for the whole Information Environment that we experience being understood as a social and cultural determinant of health. We all operate within an information environment which holds varying levels of true and false news, rumour, misinformation and disinformation - pedalled by quacks and charlatans, and further fuelled by AI. I like the definition that the American National Institute of Science and Technology uses. READ ------------------------------------------------------------------- Sources: https://csrc.nist.gov/glossary/term/information_environment Palmer, A. and Gorman, S. Misinformation, trust, and health: The case for information environment as a major independent social determinant of health. https://www.sciencedirect.com/science/article/pii/S0277953625006033 https://www.england.nhs.uk/2020/01/nhs-chief-warns-social-media-is-fertile-ground-for-quacks-charlatans-and-cranks/
• #18 READ With Palmer and Gorman, I want to see the Information Environment recognised as a social determinant of health, and incorporated into relevant Public Health Models I encourage you to take a look at the article by Palmer and Gorman
• #19 What harm can a dose of misinformation do? READ Sources:------------------------------------------------------------------------------------------------------------------------------------------------------------------- Edelman, R., J. Hauser, and C. Haupt. "Edelman Trust Barometer: Special Report-Trust and Health." New York, NY: Edelman trust Institute (2025).
• #20 The Government’s newly published Media Literacy Action Plan explicitly recognises that … READ The Plan lists key actions, including work by DHSS and UKHSA to improve public access to trustworthy health information from reliable sources – with the NHS website being a key source. And you’ll note that - Trust is rapidly becoming a very valuable social asset – remembering that Librarians are in the top 3 most trusted professions in the Veracity Index
• #21 It’s good to see the commitment to being evidence-led, and this briefing from the Health Equity Evidence Centre at Queen Mary University of London, in December 2024 is therefore very helpful. It is targeted at healthcare organisations so I have selected just 6 of the10 recommendations to mention here. READ Good to see the role of library services made it into the list of recommendations although frustrating that we can’t offer stronger evidence. Actually, this comes up in several reviews, and you won’t be surprised that isolating the contribution of librarians in the context of a multicomponent intervention is difficult.
• #22 However, we have good evidence that improving the health literacy of individuals makes a difference READ
• #23 When RAND Corporation published its 2018 report Truth Decay in the US, Barack Obama put it on his summer reading list READ
• #24 Let me turn to the Health Literacy Framework from the Network of the National Library of Medicine – which NNLM uses to help identify topics for training and activities or programmes that support health literacy. It acknowledges the role of individuals and organizations, as well as the strong influence of overarching societal and cultural factors The companion guide includes a breakdown of the framework structure, factors that influence health literacy, and some ways that libraries, healthcare organizations, universities, schools, research organizations, and community-based organizations can advance health literacy. And I’ve used this as a helpful frame through which to share some of the practical actions we can take to advance health literacy, in whichever sector we work – sharing key points from NNLM , embellished by my own experience and relevant papers.
• #25 Taking research into patient information on osteoporosis, as one example READ This could lead to people not taking medicines they are offered, or stopping treatment
• #26 From the NIHR review: READ NIHR has identified four ways we can create good quality patient information: Use plain language, avoid technical jargon, state who the information is for, explain how reliable the evidence is Focus in on personal benefits- that’s more effective than stressing community benefits or safety Digital platforms help get health content out to many people, BUT the information also needs to be accessible Offline Images, videos, animations are especially important for groups who need extra support to understand health information. NIHR has gathered a collection of materials to support people trying to get their message across So – use plan language, emphasise the issues for the individual, keep it relevant - and a picture is worth a thousand words.
• #27 Given 15 minutes in small groups, I’ve no doubt you would have come up with a similar list as NNLM– but still it’s a useful checklist of features of Information that we must consider to better support people with low health literacy
• #28 Looking at what different types of organisation can do, as advocated by the Network of the NLM READ The CCC Programme coined the term ‘Language Empathy.: which extends beyond translation to ensure that conversations occur at the individual’s level of comprehension, emotional readiness, and cultural expectation, and aligns with the person’s lived experience. We found this improved patient experience and treatment adherence.
• #29 READ slide: I have added some points here to the advice from the NLM network- And I want to flag this recent guide from NHS Providers on becoming a health literate organisation, And a Health literacy friendly organisation has been defined as - an organisation. that makes it easier for people to navigate, understand, and. use information and services to take care of their health” ----------------------------------------------------------------------------------------------------------------------------------------------- Source See https://www.chadresearch.co.uk/wp-content/uploads/2018/01/M-Oliver-CHAD-Symposium.pdf (Brach 2012)
• #30 The Network of the National Library of Medicine READ This literature review from SCHARR, Sheffield Centre for Health and Related Research, is one example of relevant research
• #31 READ And this is my opportunity to plug the LILAC Information Literacy Award winners from 2022. Read the quote Based on a survey and discussions, Alison Horner Le Riche and Barbara Moyes created teaching packs focused on evaluating resources, preparing for health appointments, and using the right services.
• #32 Recommendations from the NLM Network To which I want to add a recommendation that you read recent scoping review by Boler et al. on Disinformation Literacy. They found studies reporting on interventions by libraries and universities that share lessons learned, but bemoaned the significant gap in evaluated research which limits evidence-based recommendations. They advocate for continued research – to inform the preparation of practical, evidence-based guidelines, recommendations, and resources to support educators and librarians. They urge that research and programming must attend to the needs of adults Outside of formal education, and draw on the librarians’ integral role in delivering community-based mis/disinformation literacy activities. Also, this seems a good point to flag Health Literacy UK, one of several organisations relevant to this field of endeavour. This one is a community interest company – which wants to undertake, and support, research and influence policy
• #33 Many different libraries can strengthen their collections READ As a reminder of the core work of Public Libraries in the UK: Through the Universal Public Library Health and Wellbeing Offer, libraries contribute to reducing health, social and economic inequalities by 1)promoting healthy living; 2) providing self-management support and engagement opportunities for children and adults; and 3) being effective in signposting to services and information.
• #34 READ Staffordshire brought in an external consultant to work with library staff to understand what health literacy is, and to look at how library staff and volunteers could support people to be more health literate. Alongside signposting, promoting health resources, they have established Health Champions as advocates for the role the library plays in encouraging good health and wellbeing, And they have developed a Health literate libraries Framework for local library Champions to map their service offer against. So Partnerships are key to addressing health literacy .
• #35 And that’s why I am pleased to Chair the National Health and Digital Literacy Partnership – instigated by the NHS national KLS with CILIP, and through which we work with Libraries Connected, Arts Council England, and recently joined by the NHS App team and SCARU FOR CILIP, of which I am the immediate past President, supporting learning, literacy and social mobility is a key theme We local authorities, health charities, health services, commercial funders to get on board – sharing learning, resources, ------------------------------------------------ IF NEEDED Local pilots around the country – these three in the north of England: ------------------------------------------------------------------------------------------------- Leeds: showed the value of being able to build projects over time. Previous work to develop a network of digital ambassadors was extended to integrate health literacy skills. The team also built engagement, so that people who attended events (such as craft events) in the public library developed their digital skills and were enabled to use digital health resources. Having small-scale national project funding was a factor in being able to attract local NHS funding to extend health information work by public libraries. York and Scarborough: demonstrated the benefits of close working between NHS and public libraries. Through training and guidance on resources by NHS library staff, the confidence of staff and volunteers in the public libraries was increased, so that they were able to run health and digital literacy sessions and signpost high quality health information. Newcastle: developed a health literacy training and support package to deliver small group sessions to the public in libraries within the city. They demonstrated that resources from other services (such as videos from the service in Leeds) can be used very effectively as part of local engagement.
• #36 You can see here some of the work that has come out of the national Partnership. The Health Literacy Toolkit identifies lots of resources and, where there were gaps, we have worked to address these – developing compilations of high-quality information materials for the public, Easy Read resources, AND Health Literacy eLearning- which we developed with NHS Education Scotland All these resources are available to you – and they have been cascaded through NHS libraries, through the network of health ambassadors in public libraries, and via our local pilot sites. ----------------------------------------------------------------- Ruth Carlyle and Sue Robertson: Balancing long-term health literacy skills development with immediate action to facilitate use of reliable health information on COVID-19 in England. J Eur Assoc Health Info Libr [Internet]. 2021 Dec. 20;17(4):12-6 [Graphic updated 2024, Ruth Carlyle, NHS England
• #37 I’ve tried throughout to flag several of the organisations you might want to connect to in your efforts to improve levels of health literacy -Let me also encourage you to share and use the resources at the Info Literacy website brought to you by the CILIP Information Literacy Group. The site supports practitioners and researchers from around the world with an interest in information and digital literacy by providing news, case studies, examples of best practice and freely available toolkits. - Many of you will be familiar with the work of the Media and Information Literacy Alliance. MILA defines media and information literacy as the ability to engage fully with media and information in our connected lives, safely and healthily, critically and actively You may not be aware of the Health Information Integrity Network launched in February to help members counter harmful health information in the media, online and on social media. This is open to academic experts, communications professionals, and policy leads working in universities, charities, NGOs, the NHS, government, as well as healthcare and technology firms. -------------------------------------------------------------------------------------------------------------- Source: https://www.lshtm.ac.uk/newsevents/news/2025/rise-dangerous-health-information-uk-risks-lost-generation#:~:text=They%20warn%20misinformation%20(false%20or,%2C%20less%20productive%2C%20UK%20population.
• #38 I began today, reflecting on my journey through the station. I want to leave you thinking about how you can help vulnerable people in your community to Mind the health literacy gap? Raise awareness of health literacy as a determinant of poor health Upskill staff and volunteers with knowledge and practical techniques Target your efforts: use the geodata; engage population groups with low health literacy Co-design resources and approaches with local groups, partnering with services and organisations Upskill individuals: Ensure the health information your organisation produces meets the needs of the public Support organisations to become health literate Collaborate: work with others, research with others, influence policy together and don’t forget to measure your progress----------------------------------------------------------
• #39 And as I close- Let me reiterate, Health Literacy is a stronger predictor of an individual’s health than income, employment status, education level and racial or ethnic group That our Information Environment needs to be understood as a Social determinant of health, and addressed within policies to address health inequalities Poor levels of health literacy place a heavy burden on individuals and on health and care but we have seen that we Can take a role in improving health literacy My call to Action then is that - Wherever you work - I ask you What will you do over the coming days? In the next 3 months? Over the year ahead? Towards improving health literacy. Together, we can make a difference.