The hidden problem of low health literacy

Posted by Dr Phyllis Easton on 01-04-2014

Most frontline clinical staff encounter people with literacy difficulties every day

A person’s low literacy may be obvious to others when it is associated with language difficulties or significant cognitive impairment.  However, for a number of reasons, there is a population whose literacy difficulties remain hidden from healthcare professionals and others. These reasons include individuals’ lack of recognition or acknowledgement of their own low literacy;1,2 the shame and stigma associated with low literacy;3,4 and low awareness among healthcare staff of potential difficulties with reading, writing or numeracy in the population of patients with no obvious language difficulties or cognitive impairments.5,6,7 A recent literature review confirmed that people whose low functional or health literacy may not be obvious to healthcare staff have poor health outcomes similar to those whose difficulties are more readily apparent.8

Research in Scotland has shown that over and above the well-documented difficulties that people with low literacy can have with the written information and complex explanations and instructions they encounter as they use health services, in particular, the stigma of low literacy can have significant negative implications for participants’ spoken interactions with healthcare professionals. Participants described various difficulties in consultations, some of which had impacted negatively on their broader healthcare experiences and abilities to self-manage health conditions. Some communication difficulties were apparently perpetuated or exacerbated because participants limited their conversational engagement and used a variety of strategies to cover up their low literacy that could send misleading signals to health professionals.4

Given the prevalence of low literacy,1 most frontline clinical staff will encounter people with literacy difficulties every day. When health services and health professionals adopt practices that assume significant literacy skills, their effectiveness for a large but often hidden population of people with low literacy is limited. The stigma associated with low literacy, as well as the consequences of literacy-related mistakes, can impair people’s spoken engagement with healthcare staff, and potential to benefit from health services.4 Unless problems with both written information and interpersonal communication are acknowledged and addressed, policy ambitions to improve the experiences, effectiveness and safety of healthcare, and to reduce social inequalities in health are unlikely to be realised.

Calls have been made by patients4 and by health professionalsto make changes to healthcare systems and to the health information that is offered by health professionals, in order to make them more engaging for people with low literacy. This is particularly important for the implementation of the various health service policies evident in Scotland and elsewhere that seek to ensure that healthcare is person-centred and that patients are supported as active partners in decision-making about their own care and in the management of their long-term conditions.10-12  In practice, opportunities for people with low literacy to work in effective partnerships with staff will be substantially diminished and social inequalities in access to good quality care and outcomes are likely to be exacerbated unless communication and relationships improve.   In the absence of supportive interpersonal relationships with staff, people with literacy difficulties are particularly likely to struggle.13

To complement efforts to reduce the literacy demands that health service systems and processes make on health service users, interventions are also needed to raise professional awareness that low literacy is fairly common and potentially has a range of negative consequences for people’s willingness and ability to engage in healthcare and self-care. Training to promote non-discriminatory behaviours towards people who may struggle with literacy tasks would also be welcome.

Given the role of stigma and the associated efforts of many patients to hide their low literacy3,4 the use of formal literacy screening, particularly outside the context of an already established and trusted patient-clinician relationship, would not be appropriate and may be counterproductive.14,15 Participants in the Scottish study most prominently recommended universal solutions to their problems (simplifying the presentation of information and offering non-stigmatising alternatives to self-completion of literacy tasks to everyone, not just those with low literacy).4 Universal solutions have been advocated by others in the interests of improving health literacy in the general population, not only among those with low literacy.9 Techniques such as Teach-back, which helps healthcare providers to confirm that they have explained what the patient needs to know in a way that the patient understands have been developed and tested in the USA16 and patients and services would benefit from its wider implementation.

Phyllis Easton

Health Intelligence Manager in NHS Tayside, and wrote her PhD thesis on the topic of health literacy


  1. Organisation for Economic Co-operation and Development: Literacy, economy and society: Results of the first international literacy survey. Paris: OECD; 1995
  2. Bynner J, Parsons S: New light on literacy and numeracy. London: National Research and Development Centre for Adult Literacy and Numeracy; 2006
  3. Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV: Shame and health literacy: the unspoken connection. Patient Educ Couns 1996, 27(1):33-39
  4. Easton P, Entwistle VA, Williams B.: How the stigma of low literacy can impair patient-professional spoken interactions and affect health:insights from a qualitative investigation. BMC Health Services Research 2013 13:319.
  5. Bass PF,3rd, Wilson JF, Griffith CH, Barnett DR: Residents' ability to identify patients with poor literacy skills. Acad Med 2002, 77(10):1039-1041.
  6. Marcus EN: The silent epidemic--the health effects of illiteracy. N Engl J Med 2006, 355(4):339-341.
  7. Safeer RS, Keenan J: Health literacy: The gap between physicians and patients. Am Fam Physician 2005, 72(3):463-468.
  8. Easton P, Entwistle VA, Williams B: Health in the 'hidden population' of people with low literacy. A systematic review of the literature. BMC Public Health 2010, 10:459.
  9. Raynor DK: Health literacy. BMJ 2012, 344:e2188.
  10. The Scottish Government: The Healthcare Quality Strategy for NHSScotland. Edinburgh: The Scottish Government; 2010
  11. The Scottish Government: Equally Well: Report of the Ministerial Task Force on Health Inequalities. Edinburgh: The Scottish Government; 2008
  12. Department of Health: Equity and Excellence: Liberating the NHS. UK: The Stationery Office; 2010
  13. Entwistle V, Cribb A: Enabling people to live well: fresh thinking about collaborative approaches to care for people with long-term conditions. London: The Health Foundation; 2013
  14. Paasche-Orlow MK, Wolf MS: Evidence does not support clinical screening of literacy. Journal of General Internal Medicine 2007, 23(1):100-102.
  15. Wolf MS, Williams MV, Parker RM, Parikh NS, Nowlan AW, Baker DW: Patients' shame and attitudes toward discussing the results of literacy screening. Journal of Health Communication 2007, 12:721-732.
  16. DeWalt DA, Callahan LF, Hawk VH, Broucksou KA, Hink A: Health Literacy Universal Precautions Toolkit. AHRQ: Accessed 16/03/2014


Written by Dr Phyllis Easton

Health Intelligence Manager

NHS Tayside