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1 million people in the UK are unable to speak English well, or at all. People who speak little or no English are more likely to be in poor health, have a greater likelihood of experiencing adverse events and of developing life-threatening conditions and tend to have poorer access to and experiences of healthcare services than people who don’t have language barriers. They can struggle at all points of their journeys through healthcare. Translation and interpreting services for community languages are inconsistent across the NHS. Support for them by NHS commissioners, national programmes and NHS trusts is variable and the lack of high quality, appropriate and accessible services is stopping people from engaging with the healthcare they need. NHS organisations, including commissioners and trusts, have legal duties to provide accessible and inclusive health communications for patients and the public. This framework is designed to support the provision of consistent, high-quality community language translation and interpreting services by the NHS to people with limited English proficiency. Community languages are defined as languages used by minority groups or communities where a majority language exists (for example, English in the UK). It should be used as a framework for action across the NHS, including by NHS trusts and integrated care boards (ICBs). In primary care, it supplements the existing guidance for commissioners on interpreting and translation services and should be used alongside it.

Digital health literacy comprises the ability to find, understand, and apply health information, and to manage one’s own health by using electronic tools and information sources. Digital health literacy is a foundational element of successful healthcare transformation and increasingly important to patients, caregivers, and the public. This toolkit compiles international learnings and practices to support the advancement of public digital health literacy. Developed by the Clinical and Human Engagement work stream of the Global Digital Health Partnership (GDHP), it is intended for anyone seeking to: Develop or procure resources to build digital health literacy skills among the general public. Contextualise their existing digital health literacy work within the international landscape. Understand the evolving definitions, impacts, and implications of digital health literacy. This toolkit draws together ‘learnings and practices to support the advancement of public digital health literacy’. The toolkit consists of 5 modules: Module 1: Introduction Module 2: GDHP digital health literacy survey findings Module 3: Case examples Module 4: Checklists and considerations Module 5: Collection of digital health literacy resources.

Health Literacy in Medicines Use and Pharmacy: A Definitive Guide highlights issues related to medication literacy from the context of the pharmacist and other healthcare professionals. The book provides a clear explanation of medication literacy, presents different tools to assess health and medication literacy, readability, and comprehensibility of written medicine information (WMI), and elaborates on different approaches to develop customized and patient-friendly WMI. The book also covers health and medication literacy in special populations, including geriatrics, paediatrics, and pregnant/lactating patients. Written by experts in health communication, this book will help pharmacists, other health professionals, educators, students, and regulators, who need to develop customised educational materials that can be understood by a broad range of patients, especially those with low health literacy.

For people living with type 2 diabetes, achieving the best health outcomes requires good self-management and sticking to agreed treatment. While some studies suggest an association between poor medication adherence and lower levels of health literacy, the evidence for this association remains inconclusive. This systematic review aimed to examine the evidence on the association between health literacy and medication adherence among adults from ethnic minority backgrounds living with type 2 diabetes.

Adults in the UK are struggling to find health information they can trust and there are clear inequalities in access to information. Knowledge is Power offers new insights into information access, trusted sources, communication with healthcare professionals and the impact of misinformation. The Patient Information Forum (PIF) and Ipsos have published new research into health information access across the UK. Knowledge is Power offers new insights on information access, trusted sources, communication with healthcare professionals and the impact of misinformation.  Key findings Half of adults in the UK are struggling to access trusted health information. 1 in 10 adults in the UK have been affected by misinformation, rising to 1 in 5 for ethnic minorities. 8 in 10 adults in the UK agree access to trusted health information would help them manage their health. 1 in 6 adults in the UK say their views are not taken seriously by their health professional. This rises to 1 in 4 for ethnic minorities. Only 1 in 10 adults with long term conditions in the UK are signposted to patient organisations, yet these are highly trusted by their users. 2 in 3 adults in the UK state independent verification of health information would increase trust. Recommendations Knowledge is Power makes five recommendations on the right to health information, aligned with the three shifts proposed in the NHS 10-year plan. In summary they are: A right to health information – Health information is provided as a core part of patient care. Tackle misinformation – Through robust content standards and effective signposting of credible health information via health professionals and the NHS Apps. Tackle inequality – Health information must be accessible and appropriate for all. Lived experience as a metric – Embedding patient experience as a measure of NHS performance using the NHS Apps and single patient record. 5. Dedicated leadership – A mandate for the effective delivery of health information with a named lead in all NHS organisations.

The World Patients Alliance (WPA), Elsevier and the Elsevier Foundation are collaborating on an inspiring initiative to raise awareness about patient safety through a series of children’s books. This innovative project aims to instill fundamental patient safety principles in children aged six to twelve, fostering a culture of safer care for the future. The launch of this series marks a significant milestone in our collective mission to improve health literacy among younger generations. By presenting critical patient safety information in a child-friendly format, we aim to empower children, families, and educators to engage in meaningful conversations about health and safety. These books serve as valuable educational tools that can be used both at home and in schools.

Words convey empathy, demonstrate competence and generate trust in conversations between patients and healthcare providers. Small wording changes can affect the nature of interactions and the outcomes of an appointment or visit. This JAMA article provides examples of how subtle changes in word choice affect the information patients provide, patients’ uptake of information from healthcare professionals and patients’ adherence to recommended interventions.

Primary care services are the front door to the NHS - they are the first port of call when we feel unwell and the main coordinator of care when we are living with health conditions. The primary care team have an important role in making people feel welcomed, listened to and taken seriously. Yet we often hear examples about people who have not had their communication needs met within primary care. This includes people with sensory impairments, people with learning disabilities, autistic people, people living with dementia, people who don’t speak English fluently, people with low or no literacy, people who are digitally excluded, people living nomadically, people experiencing homelessness and many others.   This report sets out the key issues faced by people with specific communication needs within primary care and what they feel would make the biggest difference, as well as key actions primary care leaders and teams can take to support inclusive communication. 

Health literacy, defined as an individual's ability to access, understand, and use health information to make informed decisions about their health and healthcare, plays a critical role in determining health outcomes. Wider determinants of health, on the other hand, refer to a range of social, economic, and environmental factors that influence an individual's health status. This article aims to explore the relationship between health literacy and the wider determinants of health, and how understanding this connection can contribute to more effective population health management and health equity.

This Healthcare Safety Investigation Branch (HSIB) investigation focuses on the systems used by healthcare providers to book patient appointments for clinical investigations, such as diagnostic tests and scans. ‘Clinical investigation booking systems’ are used throughout the NHS to support the delivery of patient care. Healthcare services use paper-based or fully electronic systems, or a combination of the two (hybrid systems), to communicate to patients the time, date and location of their appointment. These systems also produce information for patients about actions they need to take to prepare for their appointment. Written patient communication is a key output of clinical investigation booking systems. This investigation examines the safety implications of patient communications, produced by booking systems, that do not account for the needs of the patient. In addition, it looks at why patients are ‘lost to follow-up’ after an appointment is cancelled, rescheduled or not attended. Lost to follow-up is the term used to describe a patient who does not return for planned appointments (whether for continued care or evaluations) or is no longer being tracked in the healthcare system when they should be. The reference event for this investigation was a child of Romanian ethnicity who was referred for an MRI scan, which required a general anaesthetic. The scan was booked, and a letter was sent to the child’s parents including the appointment details and pre-appointment instructions. The Trust’s booking system was only able to produce appointment letters in English, and there were no Trust processes or policies to routinely translate written appointment information. The family recognised key details in the written information, including the time, date and location of the scan. However, they were not able to understand the instructions about the child not eating or drinking (fasting) for a certain amount of time before the scan. When the family attended the appointment for the scan, the child had eaten. This meant the MRI scan could not be completed and it was therefore cancelled. When the scan was finally carried out cancer was diagnosed. The child received treatment, but sadly the disease progressed and they were placed on a palliative care pathway and died. Findings Written communications to patients about radiology appointments are routinely sent in English only. Healthcare staff expect that written appointment information will be translated by a patient’s friend or family member. NHS England standards do not require written appointment information to begiven in any non-English language, other than for people with a disability. Confusion about the requirements for appointments can result in delayed care and additional costs if appointments need to be rebooked. The language needs of patients are not always clearly understood. There is differing national guidance as to whether written communication needs should be recorded. The national NHS system that holds patient information and populates it into many trust systems (the Personal Demographics Service) can store information on patients’ preferred written communication methods. However, this information is often not entered into the system. Administrative staff are not routinely involved in assessing and testing electronic booking systems before they are implemented. Recommendations HSIB recommends that NHS England develops and implements a standard for healthcare providers on supplying written appointment information in languages other than English. Safety observations It may be beneficial for NHS care providers to explore options for the translation of written appointment communications, including pre-attendance guidance, for patients whose preferred written language is not English. Safety actions It may be beneficial if the ‘preferred written communication method’ field of the Personal Demographics Service system is completed for patients who require written communications in a language other than English. It may be beneficial if NHS trusts identify mechanisms to appreciate the language needs of their patient demographic and adjust the written communications accordingly. It may be beneficial to clarify the roles and functions of national organisations in supporting the health inequalities landscape. It may be beneficial for NHS healthcare providers to incorporate the NHS Service Standard into agreements with third-party developers of electronic clinical investigation booking systems.

The Diabetes Record Information Standard defines the information needed to support a person’s diabetes management. It includes information that could be recorded by health and care professionals or the person themselves that is relevant to the diabetes care of the person and should be shared between different care providers. It was commissioned by NHS England and developed in partnership with the Professional Record Standards Body (PRSB). The Diabetes Self-Management Information Standard defines the information that could be recorded by the person themselves (or their carer) at home (either using digital apps or medical technology, for example, continuous glucose monitors or insulin pumps) and shared with health and care professionals.

Patients are commonly given written information, for example in the form of leaflets; however, they often do not retain it and poor literacy is a barrier for many. To address this, working in partnership with a local university, a pre-operative assessment unit designed and developed video animations for patients to illustrate preparation for surgery. The aim was to enhance the accessibility and retention of information to improve patient safety and experience.

Health literacy is a person’s ability to find, understand, and use information and services to inform health-related decisions and actions. Not surprisingly, many Americans do not have levels of health literacy that allow them to truly understand their care or take appropriate actions to improve their health. According to the Centers for Disease Control and Prevention (CDC), 9 out of 10 adults have difficulty understanding health information when it is complex or unfamiliar. In this blog, Regina Hoffman, Executive Director of Pennsylvania’s Patient Safety Authority, outlines the steps your organisation can take to fulfill its role in closing the gap on health literacy.

Good patient communication is key, particularly when a patient is waiting for planned care or treatment. From referral by a primary care clinician through to discharge from secondary care – clear, accessible communication is vital throughout. The Elective Recovery Delivery Plan commits to providing better information and support to patients. As we begin to implement new, innovative ways of delivering healthcare, it is more important than ever that patients feel confident they are supported throughout their journey. Prolonged periods of industrial action and continuing pressures have inevitably had an impact on planned care. In this context, it is important that integrated care boards (ICBs) and providers do all they can to offer support to those affected by delays, including with patient communications. This guide sets out key communication principles to help providers deliver personalised, patient-centred communications. It includes considerations for communicating to patients about new models of care as well as helpful information and resources.

The Accessible Information Standard directs and defines a specific, consistent approach to identifying, recording, flagging, sharing and meeting individuals’ information and communication support needs by NHS and adult social care service providers.  The aim of the Standard is to establish a framework and set a clear direction such that patients and service users (and where appropriate carers and parents) who have information or communication needs relating to a disability, impairment or sensory loss receive: ‘Accessible information’ (‘information which is able to be read or received and understood by the individual or group for which it is intended’). ‘Communication support’ (‘support which is needed to enable effective, accurate dialogue between a professional and a service user to take place’). Such that they are not put “at a substantial disadvantage…in comparison with persons who are not disabled” when accessing NHS or adult social services. This includes accessible information and communication support to enable individuals to: Make decisions about their health and wellbeing, and about their care and treatment. Self-manage conditions. Access services appropriately and independently. Make choices about treatments and procedures including the provision or withholding of consent.

Structuring and presenting healthcare information that aligns with a patient’s level of understanding can help patients achieve optimal outcomes. Verbal communication strategies such as “teach back” and “Ask Me 3®” programmes and written strategies address opportunities identified in the event reports and may help improve patient understanding and engagement in their care. The Patient Safety Authority have collated guidance, resources and education tools on health literacy.

Risks and statistics are an essential part of patient information. What is a person’s risk of developing a particular condition in their lifetime, or of having a certain symptom if they have that condition? What are the risk factors for a disease, and can people change these? What is the chance of a treatment or procedure working? And what is the risk of getting the different side-effects and complications that can come with it? Many patients are unable to comprehend basic statistics, never mind navigate their way through the reams of data that may come with health information to compare treatment options. As information producers, our job is to make sure we can guide patients through the minefield of data and figures to help them feel confident in making their own decisions. This guide from the Patient Information Forum highlights a range of approaches and tools for unbiased communication.  This resource covers the following topics: illustrating risk, perceptions of risk, know your numbers, explaining uncertainty, useful resources and references. Communicating risk checklist Numbers not words Interpretation of words like ‘rare’ and ‘common’ varies enormously. Always use a statistic such as 1 in 100 people alongside words like rare or common. Use natural frequencies rather than percentages, for example 10 in 100, rather than 10%. When giving people two frequencies to compare, make sure they are both expressed as ‘out of’ the same number. For example, 1 in 100 compared with 2 in 100, NOT 1 in 100 compared with 1 in 50. Use absolute risk rather than relative risk The absolute risk of an event increases from 1 in 100 to 2 in 100, but the relative risk of the event doubles. Using relative risk in isolation can be misleading. Illustrating risk A great way to improve users’ understanding of risk and statistics is to use visual aids. Using a mix of numerical and pictorial formats to communicate risk is helpful. Visual displays may be most helpful for giving people an overall pattern, whereas actual numbers can be better for communicating detail. Perceptions of risk Consider using both positive and negative framing, i.e. ‘3 out of 100 people experienced this side effect, but 97 out of 100 did not’. Consider adding some context to your statistics. What would make a useful comparison to give people a sense of the likelihood, or to help them make their decision? Explaining uncertainty Communicate the uncertainty of data or if evidence is of low quality. Pre-empt misunderstandings If something is easily misunderstood, or there is a common myth, it is better to address it head-on.

"Over half of the disease burden in England is deemed preventable", says this report, "with one in five deaths attributed to causes that could have been avoided". It notes however, that progress has stalled on reducing the number of people with preventable illness and that compared to other high-income countries, we are underperforming. The authors call for a paradigm shift in prevention policy, from interventions that "blame and punish" to those that "empathise and assist". Regressive taxes and bans have not, they say, delivered the transformation required. Key to any new prevention strategy is the online information environment. Over 60% of British adults use the internet to check symptoms or self-diagnose, with the NHS website considered to be the most trustworthy. There is also, however, a "pernicious prevalence of false information". Polling shows that less than half of the population believe obesity is linked to cancer (misinformation), while over a third either agree that vaccinations can cause autism, or say they don't know (disinformation). The report states that the COVID-19 crisis shows how rapidly disinformation spreads. A poll revealed that nearly half (48%) of all British people had either seen or been sent "fake news" about COVID-19, online since the outbreak began. In addition, almost two in five (17%) said they did not know whether they had come across fake news, suggesting that the ability to identify and report the spread of misinformation is less than perfect. In this context, health education, on its own, is insufficient. We need to build health literacy (people's ability to understand health information), and work towards the goal of patient activation (enabling people to exert control over the determinants of health). The report makes a series of recommendations, including the introduction of a permanent "disinformation unit" to correct false information and help shape public health narratives. The authors conclude that "New technologies have created opportunities to reach wider audiences, but ... It is also clear that the NHS and health sector more broadly need to take a more proactive approach. As an extremely trusted source of health information, it is imperative the NHS stays ahead of the curve".

The health literacy field has evolved over several decades. Its initial focus was on individuals who had poor literacy skills. Now there is a broad recognition that everyone—not just those with limited literacy—face challenges in understanding health information and navigating the healthcare system. Acknowledging that the healthcare system is overly complex, healthcare organisations have started to take responsibility to ensure that everyone, especially the vulnerable, is able to find, understand, and use health information and services. The Agency for Healthcare Research Quality (AHRQ) provides national health literacy leadership. AHRQ’s health literacy work spans from developing improvement tools, to designing professional training and education, to funding and synthesising health literacy research. You can find health literacy improvement tools, educational and training, and publications on the AHRQ Health Literacy website.