A User experience piece of work to identify the
motivations for NHS staff to engage with Open Access
The group also meet virtually on Webex sessions and a dedicated
SharePoint site and associated e-mail list provides member profiles, space to
share and work collaboratively on documents, and a central place to pool
together our learning and discussions.
Members of the group have expressed a range of reasons for being
part of this community of practice, from being:
“keen to learn from
colleagues on this group”
to knowing “how others have experienced managing
organisational repositories to help inform the development of our digital
to having “a keen interest in grey literature – how to
capture and promote unpublished works”
and being motivated by addressing how we “could make NHS
research more accessible/visible, thus enhancing impact”
Plan S was launched in September 2018 and is a renewed and much
bolder initiative to make all publicly funded research open access. The initial
deadline for this was 1 January 2020, but based on feedback submitted, it has
now been extended to 2021.
It calls for:
all research to be made
immediately and completely available on publication, either in a compliant open
access journal or an open access platform – no embargoes, no hybrid publishing.
any publication fees to be
paid by the research funder or the author’s university (not by individuals) and
for these fees will be standardised across Europe and be capped.
Other key principles of Plan S are that:
Authors retain copyright of their publications and
impose no restrictions (preferably using Creative Commons licences)
Universities, research organisations and libraries
align their policies and strategies
The funders will establish criteria for Open Access
journals and platforms, and provide incentives to establish these were they do
not currently exist and the funders will sanction non-compliance.
How do we get ready?
In order to transition to open access, ‘transformative
agreements’ need to be in place – a contract between libraries and publishers
providing a shift between the traditional subscription model and open access
We are liaising with Information Power Ltd who have been
commissioned by the Wellcome to deliver on Plan S, to identify how we can gain
traction with transformative agreements for the NHS.
During their project, Information Power identified a
specific challenge that will hinder the ability of some health journals to make
a full transition to open access unless it is addressed, that being that
journals with a high proportion of authors based in clinical settings (i.e the
NHS) will struggle to successfully transition because these authors will not
have access to funding for Article Processing Charges, they will not be covered
by university transformative agreements, and nor is it a widespread practice
for clinicians to share full-text via repositories.
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.
1. Treadgold P, Grant C. Making the case for information: Executive summary. London; 2013.
2. Bostock S, Steptoe A. Association between low functional health literacy and mortality in older adults: longitudinal cohort study. British Medical Journal. 2012;344:e1602-e11.
4. Koh HK, Berwick DM, Clancy CM, Baur C, Brach C, Harris LM, et al. New federal policy initiatives to boost health literacy can help the nation move beyond the cycle of costly ‘crisis care’. Health Affairs (Project Hope). 2012;31(2):434-43.
5. Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, et al. Association of health literacy with diabetes outcomes. Journal of the American Medical Association. 2002;288(4):475-82.
6. Remshardt MA. The impact of patient literacy on healthcare practices. Nursing Management. 2011;42(11):24-9.
7. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Annals of Internal Medicine. 2011;155(2):97-107.
8. Baker DW, Wolf MS, Feinglass J, Thompson Ja, Gazmararian Ja, Huang J. Health literacy and mortality among elderly persons. Archives of Internal Medicine. 2007;167(14):1503-9.
9. Raynor DT. Health literacy: Is it time to shift our focus from patient to provider. British Medical Journal. 2012;344:e2188.
10. Oliveira D, Bosco A, di Lorito C. Is poor health literacy a risk factor for dementia in older adults? Systematic literature review of prospective cohort studies. Maturitas. 2019;124:8-14.
11. Dufour I, Lacasse A, Chouinard M, Chiu Y, Lafontaine S. Health literacy and use of healthcare services among community-dwelling older adults living with chronic conditions Clinical Nursing Studies. 2019;7(2):79-86.
12. Fabbri M, Yost K, Finney Rutten LJ, Manemann SM, Boyd CM, Jensen D, et al. Health Literacy and Outcomes in Patients With Heart Failure: A Prospective Community Study. Mayo Clinic Proceedings. 2018;93(1):9-15.
13. Balakrishnan MP, Herndon JB, Zhang J, Payton T, Shuster J, Carden DL. The Association of Health Literacy With Preventable Emergency Department Visits: A Cross-sectional Study. 2017;24(9):1042-50.
14. Bragard I, Coucke P, Pétré B, Etienne A, Guillaume M. Health literacy, a way to reduce social health inequalities. Revue Medicale de Liege. 2017;72(1):32-6.
15. Peterson G, Aslani P, Williams KA. How do consumers search for and appraise information on medicines on the Internet? A qualitative study using focus groups. Journal of Medical Internet Research. 2003;5(4).
16. Vida Estacio E, Whittle R, Protheroe J. The digital divide: Examining socio-demographic factors associated with health literacy, access and use of internet to seek health information Journal of Health Psychology. 2019;24(12):1668-75.
17. Miller TA. Health literacy and adherence to medical treatment in chronic and acute illness: A meta-analysis. Patient Education and Counseling. 2016;99(7):1079-86.
18. Pollock K, Grime J. GPs’ perspectives on managing time in consultations with patients suffering from depression: a qualitative study. Family Practice. 2003;20(3):262-69.
19. The Royal Australasian College of Physicians. Towards a national primary care strategy: A discussion paper from the Australian government. Sydney; 2009.
20. Panagioti M, Skevington SM, Hann M, Howells K, Blakemore A, Reeves D, et al. Effect of health literacy on the quality of life of older patients with long-term conditions: a large cohort study in UK general practice. 2018;27(5):1257-68.
21. World Health Organization, editor Health promotion: Track 2 : Health literacy and health behaviour. 7th Global Conference on Health Promotion; 2009; Nairobi: World Health Organization,.
22. Belcastro PA, Ramsaroop-Hansen H. Addressing the Antinomy Between Health Education and Health Literacy in Advancing Personal Health and Public Health Outcomes. 2017;87(12):968-74.
23. Neal MRO, Geiger BF, Cellitti MA, Smith KH. Web sense: Assisting individuals with disabilities and caregivers to find online health information. Journal of Consumer Health On the Internet. 2012;16(3):295-306.
24. SCONUL Advisory Committee on Information Literacy. Information skills in higher education. London; 1999.
25. Akobeng AK. Principles of evidence based medicine. Archives of Disease in Childhood. 2005;90(8):837-40.
26. Sackett DL. Evidence-based medicine. Seminars in Perinatology. 1997;21(1):3-5.
27. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the of medical information on the Internet quality. Journal of the American Medical Association. 1997;277(15):1244-45.
October is Health Literacy Month. For the last 20 years, organisations across the world have used October as an opportunity to raise awareness of health literacy.
So what is health literacy?
Health literacy is the ability to access, understand, appraise and use health information to make health-related decisions. In the UK, we know from work by Gill Rowlands that 43% adults struggle with text-based health information; rising to 61% if the health information includes numbers as well as text.
Health and social care staff need to be aware of health literacy issues to support access to information. Techniques such as “teach back” and “chunk and check” can increase understanding and the ability of individuals to own decisions about their health and wellbeing.
What is the local impact? This Health Literacy Month we are launching borough-level dataon health literacy levels, for textual content and for health information that includes both text and numbers. This is analysis provided by Gill Rowlands and academic colleagues at the University of Southampton. We hope that this dataset will enable you to raise the profile of the issue locally and to prioritise activity.
What can NHS library and knowledge services do?
NHS library and knowledge services are well placed to advise colleagues on techniques to support people with low health literacy, to sign-post to patient information materials and to provide training. The health literacy toolkit includes a range of resources and guidance on techniques. We are currently cascading training to library and knowledge services staff, with a suite of materials in development to use in 2020.
How can I use Health Literacy Month?
Health Literacy Month provides an opportunity to have conversations about health literacy. These may be conversations within your service, using the toolkit to assess how you might be more health-literacy friendly. Or, they may be conversations with colleagues in other departments, or with partner organisations. There are international resources available to help you to add profile to Health Literacy Month.
If you would like to share ideas, do get in touch. Ruth Carlyle, Ruth.Carlyle@hee.nhs.uk, Strategic Lead NHS library and knowledge services – East of England and Midlands