Health literacy, underpinned by digital literacy, for the 21st Century
What is our aim?
Health Education England (HEE) and the Chartered Institute of Library and Information Professionals (CILIP) are working together to support citizens to develop the skills that they will need to access, assess and use health information in an increasingly digital environment.
Health literacy: the issue to be addressed
Health literacy is the ability to access, critically review and use health information to make informed decisions.
With increasingly digital-first health services, citizens need health literacy skills underpinned by digital literacy.
The levels of health literacy in England are very low. Research by Rowlands et al (2015) shows that 43% adults aged 16-65 do not understand words-based health information sufficiently well to act on it; when numbers are added, 61% adults aged 16-65 do not understand.
How will we be working together?
We are inviting key partner organisations to join us to establish a ‘sustainable, common information environment through which skilled librarians and information providers support and empower digitally and health literate citizens’.
HEE is committed to a five-year initiative through which ‘health librarians will partner with a variety of information providers, supporting digital and health literacy’. We look forward to working with partners, each able to bring their expertise to the partnership and, for example, to share experience, learning and other resources.
As a first step, we brought organisations together for a virtual round table on 20th August. The round table demonstrated an appetite to develop a joint programme of work, with collaboration where appropriate also on parallel activities.
What will be the focus of the partnership?
Information workers across sectors are ideally placed to develop the health literacy skills and underpinning digital literacy skills of citizens. Many NHS library and knowledge staff are already working locally with information workers in their local communities, such as public library staff and community pharmacists, to provide training on health literacy techniques. We will expand the sharing of tools, such as the Health Literacy e-learning and geodata on variation in local health literacy levels. Local partnerships will embed skills for citizens.
If you have ideas for initiatives or are interested in partnership, please contact email@example.com
There has been a lot of talk about health literacy in the health library and knowledge community over the last couple of years. Health Education England worked with partners to deliver awareness and train the trainer sessions across England. Although we were not surprised at the positive response from our colleagues to this programme, we have been heartened and encouraged by the engagement within the health community and beyond.
One of the best ways to illustrate the impact of low health literacy is to share personal stories. Participants in the training programme generously gave examples of their own issues with health literacy. Inspired by this, we thought now might be a good time to share some stories from library and knowledge services on their own experiences of delivering health literacy awareness training and the impact this has had both on them personally and on their services. Here are just a couple of examples of what’s been happening:
Sylvia Hughes, Senior Library Assistant, Gateshead Health NHS Foundation Trust
“Last year I helped to deliver health literacy awareness training to library staff from across the North of England. As I read the feedback from participants, one or two comments reflected the same things that I had been thinking myself when I first heard the suggestion that NHS Libraries were well placed to support the provision of health information to the public and patient: how exactly, could I, as an NHS library assistant, do that? How could the Library have any impact on information for patients within my Trust, for example, to front-line staff dealing with patient enquiries in the out-patient clinic or the consultant responding to a patient question in the consultation room?
I first got involved in information for patients and the public in 2015. Our Library and Knowledge Service was looking for ways to supporting patients and carers and I was considering which topic to choose for my MSc dissertation. The more I began to read about health inequalities, and how poor health literacy can impact negatively on everyone’s health, I began to think what an opportunity this could be for library staff to contribute to supporting the patient AND professional. Having looked for opportunities to get involved with health literacy and supporting patient information, working with senior nurses and patient information staff, our Library produced and distributed a simple ‘Patients’ guide to health information’ which can now be found in patient areas. I have now joined our Trust patient information panel, regularly reviewing patient information leaflets, and am hoping to feed awareness of health literacy into our own patient information protocol. I completed my dissertation (and my MSc!) entitled ‘The informed patient and role of the Library’ in 2018.
Working alongside fellow library staff, we plan to run further health literacy awareness training in our Trusts as a means raise awareness and support staff further in producing patient health information. But even just noticing and helping the ‘lost’ patient navigating their way around endless hospital corridors via numerous hospital signs (which may not be really helping the patient find their way around) plays a part. We can also raise awareness of the need to produce information from the patient’s point of view. We sometimes take our own knowledge and skills for granted when sharing information in our own Libraries (for instance, using the unhelpful term ‘health literacy!’).
I think that we are very well placed to meet the challenge to contribute, to support and help to fill that health information knowledge gap. We are experts in finding, appraising, and delivering information for our readers. With a little bit of self-reflection, we are also able to imagine the emotion we all feel when faced with an overwhelming whole ‘universe’ of health information, or as one patient told me ‘gobbledygook!’
Rachel Steele, Librarian, Tees Esk and Wear Valleys NHS Foundation Trust
“I very much enjoyed delivering health literacy training to a group of library and information services staff members in January 2020 and I hope to deliver more training in the future. I had participated in previous ‘train the trainer’ sessions organised by the Community Health and Learning Foundation and Health Education England. These sessions were absolutely invaluable in imparting the knowledge and skills I required to act as a trainer in this area. The framework conceptualised health literacy as a two-sided coin – the personal and the societal. Myself and my co-trainers used this framework in our training and it seemed to work well.
Exercises were a key part of the training I delivered. We asked participants to undertake exercises to practise the techniques of ‘teach back’ and ‘chunk and check’ and we also used exercises originally devised by the Community Health and Learning Foundation designed to give participants an appreciation of how it feels to have low health literacy and not to understand information which is being imparted. I won’t say too much as to the nature of the exercise (as this may ‘spoil’ the element of surprise in subsequent training!) but acting as trainer in this exercise made me feel as though I was being unkind to participants which made me feel a bit uncomfortable. It is, however, important that people do gain an appreciation of what it is like to live with low health literacy to fully understand the themes raised and we tried to deal with participants feelings in the ‘de-brief’ following the exercise. By having a de-brief, they were able to understand why the trainers had behaved as they did and that no malign motives were intended on our part!
I intend to deliver health literacy training in conjunction with others in my Trust to groups in future, in particular to junior doctors as part of regular slots on postgraduate medical education programmes. Due to the COVID-19 pandemic, it seems increasingly likely that future training will be delivered using virtual training approaches. I believe these can work well, especially if software is used to share trainers’ screens so that exercises can be displayed for participants to work on.
I would very much encourage others to participate in health literacy training themselves and look for opportunities to deliver health literacy training in their Trusts. Health literacy is a very important issue (particularly in the context of the COVID-19 pandemic) and it is therefore vital to raise awareness of it in our various local contexts.”
Now more than ever, health literacy is vitally important and impacts both on the individual and on the whole of society. If these stories have inspired you to get involved and you would like some more information, training or advice, contact Ruth, Sue, Holly, Catherine or Joanne or email KFH.firstname.lastname@example.org
People of all ages, backgrounds, and education levels need health information, but often find it difficult to find and understand. Low literacy levels, in terms of reading, and being able to find, understand, and apply information, are a barrier to successful patient participation, and this is problematic, given the increasing recognition about the importance of engaging patients in the treatment decision-making process.
Health literacy and health information literacy are phrases that are becoming more widely used, sometimes interchangeably. However, there is a difference, and this post hopes to clarify the meaning of each.
Health literacy is the ability to understand instructions provided by health professionals. “In England, 42% of working-age adults are unable to understand and make use of everyday health information, rising to 61% when numeracy skills are also required for comprehension” (1), and “around one in five adults cannot read or understand simple instructions or labels such as those found on medicine bottles” (2, 3). The inability to read can result in patients taking medicines at the wrong times, not following dosages correctly, or not understanding instructions properly (4). For example, if the label on the prescription says “Take three tablets daily”, does this mean take three tablets at the same time or take one tablet three times a day? The quote in the box below, comes from a Facebook post written by a surgeon, and perfectly illustrates the consequences of misunderstanding medical instructions.
Health information literacy
Health information literacy, although often referred to as health literacy, has a more in-depth scope. It is not only about access to the Internet and online health information, but also about having the skills required by people to effectively recognise:
· what they need to know about their condition and treatment options,
· how to find that information, to fill those knowledge gaps,
· how to appraise the information to ensure it is good quality, and relevant to their personal context, and then
· how to use the information with their health professionals so that they can make an informed decision that suits their needs (5, 6).
Poor health information literacy can result in poorer health outcomes, unhealthy lifestyles, increased incidence of chronic conditions and mortality, greater use of emergency services, and increased hospital stays (1, 7-13).
Role of librarians
Maimonides, a Spanish philosopher said “Give a man a fish and you feed him for a day; teach a man to fish and you feed him for a lifetime.” This quote reflects the importance of health information literacy, because if you find the information for the patient, their query will be satisfied, but if you teach them to search and appraise, they will be able to make informed decisions throughout their care pathways.
Health information literacy is an area where librarians, from all sectors, whether medical, public or academic, are in a strong position to support. They already have the resources, skills, and processes in place (14). Librarians can signpost people to the best sources, and teach them to search, retrieve, and appraise what they find (15). Medical librarians have the skills associated with evidence-based practice, as it is embedded in their roles, their primary function being teaching health professionals how to find and appraise the evidence. They also have access to the
relevant information sources, while public and school librarians are a trusted source within their communities, and understand the local context. Working in partnership would improve access to good quality health information at a location accessible to local people, who most likely would not have access to medical libraries.
People benefit from having access to good quality health information because it enables them to make informed decisions and follow their treatment regimens more effectively and safely (16-18). Informed patients are more likely to comply with the treatment regime, resulting in improved health, and reduced length of stay, and hospital admissions. Since the average doctor’s visit in England lasts 8-10 minutes (19), patients need to be ready to ask the right questions. Helping patients to self-manage by improving their health information literacy skills will benefit both the patient and the health system (1, 20, 21). By improving access to clear, current, accurate, and understandable consumer health information, health inequalities can be reduced and patients will feel more empowered (1, 22).
Creating health information literacy support programmes and resources is a new area for medical, public, and school libraries to work and lead on together. Library communities would benefit, in terms of professional development, more efficient working practices, and demonstrating value to the community. Patients could see improved health outcomes and better quality of life, health, and wellbeing, while health services might see a reduction in health service utilisation.
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