Health Literacy Report from an RCGP-led health literacy workshop
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Health Literacy
Report from an RCGP-led health literacy workshop
June 2014Health Literacy Report from an RCGP-led health literacy workshop Gill Rowlands MD FRCP FRCGP, Royal College of General Practitioners Joanne Protheroe MRes PhD FRCGP, Royal College of General Practitioners Hannah Price BA (Hons), Royal College of General Practitioners Bob Gann BA (Hons), NHS England Imran Rafi BSc (Hons) MSc PhD DFMS FRCP MRCGP, Chair of Clinical Innovation and Research, Royal College of General Practitioners Correspondence Dr Imran Rafi (irafi@rcgp.org.uk) The RCGP Clinical Innovation and Research Centre are pleased to have produced this report and facilitated the workshop. We are particularly grateful to Luke O’Shea and his team from NHS England for their support and would like to thank all the workshop participants for their excellent contribution.
The Royal College of General Practitioners was founded in 1952 with this object: ‘To encourage, foster and maintain the highest possible standards in general practice and for that purpose to take or join with others in taking steps consistent with the charitable nature of that object which may assist towards the same.’ Among its responsibilities under its Royal Charter the College is entitled to: ‘Diffuse information on all matters affecting general practice and issue such publications as may assist the object of the College.’ © Royal College of General Practitioners, 2014 Published by the Royal College of General Practitioners, 2014 30 Euston Square, London NW1 2FB All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permis- sion of the Royal College of General Practitioners. ii
Contents
Foreword........................................................................................................................................... iv
Executive summary........................................................................................................................... v
Introduction......................................................................................................................................1
1. Literature background...............................................................................................2
2. Health literacy: an overview ....................................................................................3
3. What challenges does health literacy bring?..........................................................5
4. The importance of communication..........................................................................7
5. Low health literacy and health.................................................................................9
6. The health literacy environment.............................................................................10
7. Good practice...........................................................................................................11
8. Interactive and critical health literacy....................................................................13
9. The Information Standard.......................................................................................14
10. Health literacy in practice: case study from the Terrence Higgins Trust...........15
11. The NHS England Digital Inclusion Strategy........................................................16
12. Summary of breakout group discussions.............................................................18
13. Conclusions and call for action.............................................................................20
References.........................................................................................................................................21
Appendix I: Group members and their affiliations...........................................................................23
Appendix II: Key texts and other resources......................................................................................25Health Literacy Foreword I would like to congratulate the authors and them to manage their conditions. Through collaborators of this report, headed by our undergraduate and postgraduate education and clinical lead Dr Gill Rowlands, in profiling the training around healthcare literacy we can hope important concepts around health literacy. As that present and future healthcare professionals a working GP I recognise and understand the will understand the importance and relevance of need to provide meaningful information to my health literacy. My hope is that this report serves patients in managing their conditions. However, as a catalyst for change. this report highlights the fact that many people engaging both across primary and secondary Dr Maureen Baker care may simply not have the assumed Chair of RCGP Council levels of healthcare literacy that empowers iv
Health Literacy
Executive summary
Health literacy skills are ‘the cognitive and 2. Health literacy is key to more effective use of
social skills which determine the motivation resources, through increased understanding
and ability of individuals to gain access to, of how best to access and use health services,
understand, and use information in ways which through confidence and skills to enable
promote and maintain good health’.1 In view of decision-making that is shared between
the importance of health literacy to patients and doctors and patients, through to ensuring that
the NHS, NHS England sponsored a meeting, patients take a full role in developing services
hosted by the Clinical Innovation and Research that fit with the needs of local populations.
Centre (CIRC) of the Royal College of General 3. GPs have a central role in this through:
Practitioners (RCGP) in collaboration with the a. Improving communication skills, and
Chair of the Health Literacy specialist group (a tailoring information not only to clinical
Special Interest Group of the Society of Academic need but also to patient health literacy
Primary Care [SAPC]). The meeting was held in
b. Working with NHS managers to develop
July 2013 and brought together key stakeholders
health systems and environments
(see Appendix I), which included NHS England,
accessible to all regardless of health
professional and patient advocacy groups.
literacy level
The aim was to facilitate discussion about the
c. Supporting patients to develop health
important principles around health literacy
literacy skills, both in understanding
relevant to primary care.
and using health information, and in
understanding their rights to clear,
Central to the discussion was a shared
accessible information tailored not only to
understanding of what is meant by the term
their clinical need but also to their health
‘health literacy’. Health literacy is needed for
literacy
patients and the public to understand and act
upon health information, to become active and d. Acting as agents for change through their
equal partners in co-producing health, and to role as commissioners of health services.
take control of their health to help to shape 4. NHS commissioners should engage with
health environments and health services for local community networks and advocates,
themselves, their families and their communities. including the lifelong learning community.
5. Tools to check the effectiveness of
In addition to learning about health literacy communication, and surveys to check patient
and its impact on patients, the public and the satisfaction, could be widened to include
NHS, those present brought their perspectives communication and health literacy.
and expertise to the discussions. Several themes 6. New initiatives must be targeted at those
emerged as follows. with the greatest need, including those with
the lowest health literacy skills. One such
1. Health literacy is central to ensure fairness initiative, the NHS drive for digital inclusion,
and equity in the NHS, with high-quality may do much to increase access, information
services being delivered to all.
vHealth Literacy
and health literacy skills among those with 9. NHS England has a role to highlight
the greatest need. the importance of health literacy to
7. The Information Standard is an independent commissioners and NHS Trusts.
certification scheme that is commissioned by
NHS England for all organisations producing The meeting ended with calls for action, as
evidence-based health and care information follows.
for the public. Information Standard members
1. That the important discussions and themes
can lead the way in developing excellence in
arising from the workshop continue to be
health information accessible to all, regardless
explored and developed.
of health literacy level.
2. That the RCGP and NHS England consider
8. The RCGP has a role in highlighting the
working together to develop a five-year plan
importance of health literacy among its
of action to address the challenges brought
members, and to work with those who are
through low health literacy, focusing on the
leading GP undergraduate and postgraduate
themes identified in the workshop.
training to ensure that this takes place.
viHealth Literacy
Introduction
Health literacy skills are ‘the cognitive and He noted too that:
social skills which determine the motivation
[t]here is more health information
and ability of individuals to gain access to,
being produced all the time, and we are
understand, and use information in ways which
learning to be [health] literate as a nation;
promote and maintain good health’.1 In view of
it is important to ensure that no one is
the importance of health literacy to patients and
left behind. NHS Choices is about to be
the NHS, NHS England sponsored a meeting,
re-launched as a marketplace for services
hosted by CIRC in collaboration with the Chair
and tools. The NHS is an engine of social
of the Health Literacy specialist group (a Special
justice and we must make health literacy
Interest Group of the SAPC).
real in our society. NHS England has
found £1 million to take 100,000 people
Tim Kelsey, National Director for Patients for
through basic digital training. We will
NHS England, noted the following points.
have to move quickly and there is much
• The 1948 health service was set up to to do, but this is a good start.
deliver a high standard of care for all.
Sixty-five years later it is not doing so; Clare Gerada, the Immediate past Chair of RCGP
there are high variations in health care Council, noted that:
and health outcomes.
this is very exciting looking forward
• NHS funding is becoming critical; it is
and in future the NHS will have to try
estimated there will be a funding gap of
to engage the public in an equal way
£30 billion by 2020.
with regards to their health. It must be
• Through giving people more control over
questioned how you can have shared
their own health, the aim is to find new
decision-making if patients don’t
ways to engage and listen to communities
understand the language you are using.
and health services, which is fundamental
GPs come across health inequalities every
to controlling the sustainability of the
day. Unless they support the patients to
health service.
improve their health literacy, how can
• At the core of this is health literacy as a they further engage patients?
way to help and support people to make
use of information.
1Health Literacy
1 Literature background
Health is complex and requires both motivation with low basic skills. Recent surveys in the UK
and skills. There are increasing demands on the show that the percentage of adults below the
public to promote their health and wellbeing, literacy level expected at the end of full-time
and on patients to be able to understand and compulsory education (16 years) is 43%; for
manage their health and engage in shaping local numeracy the percentage below the expected
health services.2 A health literacy skills set is level at the end of compulsory education is
essential. Doctors need good communication 78%.3 This is reflected in the levels of health
skills too in order to share complex information literacy. Forty-three per cent of the English adult
in a clear and manageable way, and to tailor working-age population cannot fully understand
information to patient skills as well as clinical and use health information containing only
need. This specifically applies to GPs’ provision text. When numerical information is included in
of information, which can include the nature of health information, this proportion increases to
a diagnosis, the risks and benefits of different 61%.4
treatments, and how to take medications in
a safe and effective way. A key role for GPs Written health literature and doctors’ spoken
is to support patients to develop the health communication are often not pitched at a level
literacy knowledge and confidence to improve that is inclusive of people with low health
their own health. Health literacy skills extend literacy. Some of the greatest problems arise from
beyond consultation, as patients need to know the mismatch between what health institutions
how to access, understand and make use of demand and expect from patients (by what they
health services in ways that can promote and produce in print, in oral exchanges, online and
maintain good health, to gather, evaluate and use in the physical environment) and the skills of the
information for health from a range of sources, patients and families they are intended to serve.
both within and outside the NHS, and to become Making services more responsive to patients is a
meaningfully involved with the development of core focus of UK health policy.
local NHS services.
Doctors have a responsibility to communicate in
Health literacy is an important determinant of a way that takes account of the diverse levels of
health. People can be well educated and even health literacy of their patients, enabling people
very literate and have low health literacy, but to make informed choices about their own health.
low health literacy is most common in people
2Health Literacy
2 Health literacy
An overview
Dr Gill Rowlands
Health literacy can be divided into three levels: general practice. GPs have an important role in
functional, interactive and critical. GPs are key, supporting patients to develop their skills and
as 90% of all encounters in the NHS are in also have a powerful role in commissioning.
Functional health literacy
These are the basic skills of reading, discussing cannot understand health materials. Those
and understanding text, and being able to do facing the biggest barriers are older people, black
numerical calculations. One way of measuring and ethnic minority groups, those with low
this is to give people a test (measuring absolute qualifications, those without English as a first
levels of functional health literacy). There are language, those with low job status and those in
multiple measures, which range in complexity the poverty trap.4
and time. When understanding the relevance of
health materials for patients, one important thing An exploratory analysis of how health literacy
to understand is the gap between the complexity skills relate to information communication
of the health information and the skills of those technology (ICT) skills as measured in the most
for whom the information is written (relative recent English National Skills Survey (the Skills
heath literacy). Regarding absolute levels of for Life Survey [SfL] 2011) found a marked
functional health literacy, results vary as per the overlap.3 For example, for word processing, the
measures used. For example, in the US 46% of study compared people below and above the
people operating within the lowest two levels health literacy threshold. Those who failed the
would experience significant problems. With word-processing skills test were significantly
regard to relative levels of functional health more likely to be below the threshold. The same
literacy, health materials containing only text was found when the group tested emailing and
are too complex for 43% of England’s working- spreadsheet skills.5
age population to be able to understand and
use; for materials containing both text (literacy) Previous research indicates the impact of low
and numeracy, 61% of England’s working-age health literacy on patients and the Health
population find the material too complex.4 Service. Low functional health literacy is
linked with more use of hospital services with
There is significant regional variation. There is a higher in-patient and Accident and Emergency
north/south divide, with London as an island of (A&E) Department use, and with lower rates
deprivation in the south of England. However, of screening uptakes including mammography
low health literacy is a problem for everyone; and flu vaccine.6 There are also higher levels of
even in the least deprived areas there is still a mortality in older people.6–8
significant proportion of the population who
3Health Literacy Interactive health literacy This is about patients having the skills and options or questioning why a particular confidence to discuss their illness and treatment treatment is right for them. This promotes shared with doctors or nurses, asking about other decision-making.9 Critical health literacy This is about people trying to take control of the critical health literacy, the balance of power wider determinants of their health, for example transfers to patients and the public.10 We have to having the skills to take action if they identify move to this model; it might be uncomfortable barriers to health in their environment such as for healthcare professionals (HCPs) but it takes not enough access to fresh fruit and vegetables patient self-determination and control to a or not enough open spaces for exercise.9 With different level. 4
Health Literacy
3 What challenges does health literacy bring?
Health literacy is important. We know it affects space. Health service managers can ensure
health, so it is reasonable to assume it affects information is written in the right way. Health
wellbeing too. It is a common problem that service commissioners are agents for change. The
affects half of the population and is complex Information Standard (p. 14) is a powerful tool
and influenced by all areas of life. We have to for ensuring that high-quality health information
make sure we develop a range of solutions for incorporates health literacy.
individuals and families. We know communities
have knowledge about their environments. The issues brought about through low health
GPs add to this by providing an environment literacy affect patients, HCPs, managers and
for people to develop health literacy in a safe commissioners of health services.
Challenges for patients
• Understanding and using the wide range Comments from the workshop members
of information relevant to health, which is ‘It is a wonderful idea to improve
written at varying literacy and numeracy communication with patients. It is difficult
levels, without being patronised. when we look at it from a health inequalities
• Difficulty assessing accuracy and and health information perspective. The gap
provenance of health information. here is in danger of widening. It is necessary to
• Understanding medical terms and language. commission at patient and population level to
• Developing the language and skills to ensure that those at the bottom don’t fall behind.’
challenge and explore doctors’ suggestions
for treatment. ‘Many people I look after cannot read. If we are
• Developing the language and skills to moving to a digital platform the people who
manage their own health within the context cannot read or write may be able to come back in.’
of their lives, including work, family and
community.
Challenges for doctors and other healthcare professionals
• Different styles and levels of communication • There is frequently a tension between use
are needed for people with low health of complex medical terminology and more
literacy and those with very high health everyday common-sense language.
literacy. • There is an absence of acknowledgement and
• Current healthcare environments do not support for people with low health literacy.
recognise the needs of people with varied • HCPs, including doctors, need to be able to
levels of health literacy. assess, recognise, support and improve the
5Health Literacy
health literacy of people as an integrated language barriers or multi-morbidity).
part of clinical practice and prioritise those HCPs need to measure change by feedback.
most in need (for example those with
Challenges for managers
• Developing streamlined ‘health literate’ • Ensuring health literacy training for
services accessible to all regardless of health frontline clinical staff and others with face-
literacy level. to-face patient contact.
• Ensuring ‘health literacy awareness’ of all
staff.
Challenges for commissioners
• Enabling meaningful engagement of people The Year of Care planning model (http://
at all health literacy levels. healthandcare.dh.gov.uk/year-of-care/) mentions
many of these aspects. The Year of Care model
The group felt that this is about support from
from the Chronic Care model is helpful in
organisations with strong trust relationships
putting it all together.
in communities. This needs to be resourced
and commissioned. Also, the NHS needs to
commission personalised services. Research The EU Health Literacy Survey
should be used to build or support a compelling A good study measuring interactive and critical
narrative. health literacy is the EU Health Literacy Survey.11
This study developed a conceptual framework
The group talked about the commissioning and then a matrix to measure perceived ability
environment; there are big challenges but there to access, understand, appraise and apply
is sufficient funding to start making a difference. health information across the three domains
It would be necessary to follow the money. This of health care, disease prevention and health
will not happen overnight, and would most promotion. Eight countries (unfortunately not
likely entail a five-year programme of work. including the UK) took part in this survey. This
It is important not to tell commissioners to do replicates the functional health literacy findings
this, but to present it as a solution to an existing in England. People with low literacy skills make
problem. The NHS needs to understand the more use of hospital services and are less likely
value of advocates, and there is evidence that to get involved in preventive activity. They are
this works. When communicating with patients also more likely to die at a younger age. It is
and the public, short slogans are linked to interesting that the problem is worse in countries
positive outcomes. with the most poverty.
6Health Literacy
4 The importance of communication
Health literacy relates to more than just reading patients.13 Several researchers have found that
and writing (or ‘general literacy’). It also includes doctors do not adjust their communication when
the ability to access, understand and act upon seeing patients with varying levels of health
health information and services12 as well as literacy, and they may fail to realise that they
wider issues of motivation1 and the ability to have not made themselves understood.14
take control of environmental and social factors
influencing health.9 Not everybody has had the Good diabetes self-care includes patients
opportunity to study biology or basic science. regularly monitoring their own blood glucose
Many people have minimal knowledge of health levels to keep them within a narrow range. Yet,
conditions or how their own bodies work. patients with diabetes may struggle to make
Doctors, having spent many years immersed sense of this unless they know that it is part
in the biology of human health and disease, of normal biology for blood to contain some
may overestimate the health literacy of their glucose.
Misconceptions and misunderstandings
Patients with limited literacy may feel People with poor health literacy will struggle to
embarrassed by their lack of understanding make use of written health information, which
or poor reading skills, which can stop them often requires a level of literacy that many
asking for clarification or looking for alternative patients do not have.4 Increasingly, patients
sources of information.15 This mismatch are sent copies of clinic letters; they struggle
in communication is an important factor to understand these and this may be a source
contributing to poor health. of frustration and confusion. More and more,
the internet is a source of health information.
Doctors may use familiar words in unfamiliar ICT skills are moderately correlated with both
ways. For example, when health practitioners literacy and numeracy skills, thus those with
use the term ‘chronic’ they frequently mean low literacy and numeracy skills, and health
‘persistent’, whereas a common alternative literacy skills, are also likely to have low ICT
understanding of the word is to mean ‘severe’.16 skills.3,6 Furthermore, those with low health
Doctors can unintentionally use words that are literacy skills will also have the least access to
unfamiliar to their patients, without realising sources of information, including the internet.4
that the meaning is not clear. Some concepts New initiatives to increase patient understanding
familiar and obvious to doctors may be alien to of, and control over, their health and health care,
patients. such as access to medical records, may also be
less accessible to those with low health literacy
Doctors often supplement brief spoken skills, arguably one of the groups with the most
information during the consultation with leaflets to gain from such access.
and booklets, assuming they can be understood.
7Health Literacy Patients typically retain around half of the only half of what they do retain is generally information they receive in a consultation, and correct.17 Treatment errors Low health literacy can prevent people patient information leaflet is included in the box. understanding the diagnosis they have been Low health literacy prevents many people from given. It can also lead to treatment errors. Adults being able to interpret this information and this with low levels of literacy have increased rates inhibits understanding of medication warnings of misunderstanding medication instructions.18 and precautions. All medication in the UK is clearly labelled and a Shared decision-making When decisions are made jointly between in shared decision-making. This includes the doctors and patients, this can lead to improved process of informed consent for medical and health outcomes, higher levels of patient surgical procedures. Patients must be given satisfaction and more effective use of resources.12 enough time and understandable information to Low health literacy is a barrier to participating fully appreciate the implications of their consent. 8
Health Literacy
5 Low health literacy and health
Poor health literacy has substantial health dying for older people with low health literacy,
consequences: people with low health literacy compared with their more health-literate peers.7,8
report worse physical and mental health, This link remains even after other factors, such as
which is supported by a higher prevalence of a poverty, are taken into account.
number of serious health conditions, including
diabetes and heart failure.6 These individuals
have less adequate health knowledge, access Personal communication from a physician
fewer preventive services and have poorer
One patient with arthritis came in to hospital
self-management skills. Repeated studies have
unable to move due to swollen joints. It turned
shown that those with low health literacy are
out that her appointment four months ago
more likely to access emergency services or to be
had been cancelled but she hadn’t known how
admitted to hospital, and have a reduced quality
to get help, and so had simply lived with her
of life.6 Studies also suggest an increased risk of
deteriorating symptoms.
9Health Literacy
6 The health literacy environment
Health literacy is an important determinant Health service managers can play a key role in
of access to health care. Doctors instinctively developing ‘health literate’ environments. This
know how to navigate themselves and their can include a health literacy risk assessment of
families through health services. People with all information and materials given to patients,
low health literacy may struggle to book or and clear signage avoiding jargon and using
cancel appointments. They may be unsure of lay terms whenever possible, for example ‘heart
how to respond to an adverse reaction to their section’ rather than ‘cardiology department’. All
medication. Many patients with long-term staff should be made aware of health literacy
conditions do not know what to do if their health and the challenges it can bring; all staff with
deteriorates between planned consultations. patient contact (clinical and non-clinical) should
Even working out how to get to the right place have regular health literacy training. There are
in a health facility requires a degree of health well-developed and tested tools available to help
literacy. managers develop health-literate services,19 and
managers should be encouraged to use these.
GPs undertake 90% of face-to-face medical
consultations in the NHS and are thus in an Finally, patient assessment of services is
excellent position to work with patients and increasing;20 managers should consider adding
patient advocates to design systems that are some simple questions to patient feedback
more accessible to people with low health surveys to assess patient views on the clarity, or
literacy. As people who regularly meet patients, otherwise, of hospital and GP surgery systems
they are in a position to identify barriers and information. Including patient experts and
in the system and work to develop health patient advocates in the design of the systems
environments that facilitate better access. that are more accessible, including design of
buildings and signage in new NHS premises,
will help the NHS to provide services accessible
Personal communication from a GP
to all regardless of their health literacy skills.
A patient referred for a chest X-ray didn’t have it
done because he walked round the hospital and
couldn’t find the department because the sign
read ‘Radiology’. He was too embarrassed to ask
for directions.
10Health Literacy
7 Good practice
There are several concrete steps that doctors This is particularly important when doctors are
can take to improve communications with all meeting patients for the first time. Repeating
patients, regardless of health literacy level. information in this way also reinforces it in
Speaking slowly, avoiding jargon and repeating patients’ minds.
points all improve comprehension. Doctors
should encourage and expect all patients to Doctors can also reduce the impact of low
ask questions using techniques such as those health literacy by communicating in ways
identified in the ‘Ask me 3’ patient education other than speech and printed material. Some
programme.21 concepts are better conveyed visually. Almost
every consulting room has a computer screen,
Doctors should first establish what the patient and graphics and multimedia can be used to
knows and understands before launching into supplement more conventional illustrations and
a discussion that begins at a level either too three-dimensional models.
complex or too simple for the patient.
Doctors should apply a ‘universal precautions’
To check understanding and recall of the approach to communication (that is,
consultation, doctors should ask for patients communicate clearly and without jargon for all
to repeat back critical information in their own patients) and not only when health literacy is
words. Using this technique, known as ‘teach obviously low. It is important to give patients
back’, will clearly establish whether the patient clear opportunities to return with further
has understood the consultation.22 When doing questions, either written or verbal, at a later date.
this, doctors should emphasise that what they Patients who are well spoken and educated may
are checking is their own ability to communicate, also have low health literacy and this may be
not the patient’s ability to understand. By closing exacerbated by the stress of being unwell. By
the communication loop in this way, doctors can consistently practising good communication,
identify which explanations and communication doctors can improve care for all their patients.
gaps are most often understood by patients.
11Health Literacy
Comments from the workshop members
• ‘Regarding functional literacy, there • ‘Whether or not people trust [their GP]
are huge barriers for someone with influences understanding. We will have
learning disabilities. Bringing people to to understand health literacy in a more
the information may not be realistic. The complex way.’
information may need to change.’ • ‘The challenge is how to make the sum of
• ‘There is much to learn from the learning the solutions greater than the individual
disabilities field. They have done great work parts. Any work moving forward should
on simplifying information to date (e.g. look at bringing the disparate strands
Books Beyond Words). In the short term we together. Having something measurable is
have to simplify the way we do things and very important.’
need to learn from colleagues. Information • ‘We need real actions to take forward from
should be tailored appropriately for the today. There is huge momentum and it is
group that needs to access it. We need to our responsibility to ensure it delivers real,
raise the skills of the population at the same hard outcomes.’
time as simplifying information, but one
size will not fit all.’ ‘Ask me 3’ is a technique for patients to use
when dealing with health professionals. By
• ‘The point [of Books Beyond Words] is to
asking these three questions, they can improve
allow people to tell their own story rather
communications with their doctor:
than to tell our story. The most important
thing is to establish reciprocity and learn • What is my main problem?
from people about their circumstances.’ • What do I need to do?
• Why is it important for me to do this?1
12Health Literacy
8 Interactive and critical health literacy
Almost all research to date has focused on The NHS, like all health services, is having to
literacy and numeracy skills in the health setting, provide more health care to more people within
that is, functional health literacy.9 However, limited resources;23 the only sustainable way for
the expanded definition used in the UK this to happen is for increased health promotion
includes wider and higher-level cognitive skills. and patient self-care.24,25 The latest NHS
Interactive health literacy skills are those that reorganisation is placing an emphasis on patient
enable people to ‘actively participate in everyday involvement in shaping local services, with ‘no
(health) activities, to extract information and decision about me without me’.2 An appropriate
derive meaning from different forms of (health) and effective way to take these agendas forward
communication, and apply new information is to build interactive and critical health literacy
to changing circumstances’, while the highest- skills in the population. Teaching such skills
level skills (‘critical’ health literacy skills) enable is complex, but lifelong learning initiatives for
people to ‘critically analyse information and use individuals and families are showing promising
this information to exert greater control over life results.26,27 The recent movement of public health
events and situations’.9 These higher-level health from the NHS into local authorities28 brings
literacy skills will be required to enable patients many opportunities for closer working between
and the public to promote health and wellbeing, the NHS, public health, education and social
protect their health through involvement in care, including collaborative projects to build
illness prevention (for example, involvement in patient and public health literacy skills.
disease screening and understanding of personal
and public safety), and manage any illnesses
they may develop.
13Health Literacy 9 The Information Standard The Information Standard is a certification make systems clearer, reduce complexity and scheme for organisations producing evidence- improve communications. The Information based health and care information for the public. Standard is thus a powerful driver for change. A Any organisation achieving the Information recent survey of Information Standard members29 Standard has undergone a rigorous assessment indicated that the majority of members had to check that the information it produces is heard about health literacy but 20% had not. clear, accurate, balanced, evidence-based and The majority already think they are producing up-to-date.29 Information Standard-accredited information at the right level; 30% identified one organisations should be writing at a level that’s or more barriers to accessing information; and appropriate for the population. Such approaches 70% wanted to learn more about health literacy. 14
Health Literacy
10 Health literacy in practice
Case study from the Terrence Higgins Trust
Case study by Dominic Edwardes, Health Improvement and Marketing Director,
Terrence Higgins Trust
The key thing about health literacy is that it diseases (STDs) and HIV. Looking at men who
involves the audience rather than the producer. have sex with men, they are familiar with HIV
We need to put the consumer at the centre. The messaging, tend to have higher partner change
issue with health literacy is people being able to and love sexualised imagery. They have high
use the information. levels of internet access and are known to be
early adopters of technology. The Terrence
The fact that 43–61% of the population have low Higgins Trust has created a condom campaign
health literacy skills4 is surprising. Information is online that also encourages STD check-ups.
wasted if it isn’t produced in a way that people
can understand and find useful. There are three Messages can look different for different
key dimensions to health literacy: reading level, audiences. The Trust has now developed a
numeracy level and language barriers. We message that looks broadly the same but that
have to understand how people are accessing approaches both gay men and the African
information. For example, at the Terrence audience. Both groups are engaged with starting
Higgins Trust it is known that gay men like to things. The campaign is ‘It starts with me’ and
use iPhones. has slightly different approaches, but the same
message for each group. For example, the use
Can one size fit all? Yes and no. Using examples of condoms in the campaign resonates with
from the work of the Terrence Higgins Trust the message of responsibility for the African
and looking at African audiences we know that audience and the message of better sex for men
stigma is huge in stopping people from accessing who have sex with men.
information on human immunodeficiency virus
(HIV). Most people who have come to the UK The mobile will overtake the desktop and it is
think that they have left the problem of HIV important for the Trust to know that creating an
behind them. These people also have a strong app will reach its target audience for men who
dislike of sexualised imagery and have lower have sex with men. It is now possible to order a
levels of internet access. postal HIV test kit via your mobile.
To reach this audience the Terrence Higgins What can GPs do? They can direct HIV sufferers
Trust created a healthy-lifestyle magazine, which to the Terrence Higgins Trust, they can look for
includes information on HIV. This is proving materials produced by the Information Standard
successful and is in its tenth edition. There are and they can promote NHS Choices.
also leaflets about testing, sexually transmitted
15Health Literacy
11 The NHS England Digital Inclusion Strategy
Exploiting the power of the digital revolution of internet access or broadband.
to transform health care, and delivering
interventions that address health inequalities, Furthermore there is a strong correlation
are leading objectives for NHS England. The between low levels of digital skills and low levels
NHS England Mandate30 made a commitment of health literacy.
to operate at the forefront of new technologies.
• Those working-age (16–65 years) people in
That Mandate states: ‘[t]he objective is to achieve
England have the least access to sources of
a significant increase in the use of technology
health information, including the internet.4
to help people to manage their own health and
care’. At the same time there is a commitment to
reducing health inequalities with an NHS ‘for The NHS England business plan32 has set out an
everyone regardless of income, location, age, ambitious programme of digital transformation
gender, ethnicity or any other characteristic’.30 including:
• giving citizens the knowledge, skills and
However, these objectives can be difficult to confidence to manage their own health
reconcile. Those who make greatest use of health
• using modern techniques such as social and
services, and those experiencing greatest health
digital media to supplement other forms
inequalities, are exactly those least likely to be
of insight, so that we hear views from all
online,17,31 or to have ICT skills.3
sections of society and understand what
people are saying about the health services
• Over 16 million people in the UK lack basic
they want to receive
digital literacy skills.
• making best use of digital channels to
• Over 7 million people in the UK have never
offer people more convenience, choice and
used the internet.
control.
• People over the age of 65 account for more
than half of all NHS spending. However,
This transformation will not be delivered if
40% of those aged 65 and over do not have
the benefits are not available to the 7 million
access to the internet at home and 5 million
people who have not been online, the 16 million
of these have never been online.
people who lack basic digital literacy skills, or
• People with a disability are three times more the 21 million people with low health literacy
likely to have never used the internet. Four and numeracy.4 Extending digital access and
million people with a disability have never boosting digital literacy skills are central to NHS
been online. England’s approach to equality:
• The homeless, offenders, the Gypsy
Equality lies at the heart of the NHS, its
and Traveller community and people
values, processes and behaviours. People
in some rural communities experience
have a right to high quality services,
health inequalities. These people are at an
irrespective of who they are, where
additional disadvantage because of the lack
16Health Literacy
they live, or what condition they have. A programme of work has been designed to
There is clear evidence that people from deliver:
disadvantaged communities are at greater
• the establishment of a network of
risk of early death than the average
community hubs in deprived areas to
population.32
provide training in online skills and assisted
digital support in accessing online services
People with the lowest health literacy, itself a risk • the development of online training tools
factor for poorer health and higher mortality,8,9 • user testing of digital products and services
also have the least access to sources of health with less digitally skilled users
information, including the internet. This finding
• the building of the evidence base on
means that this extension of digital access and
digital literacy’s contribution to increased
digital literacy skills will need to be specifically
patient empowerment and reduced health
targeted at groups at higher risk of low health
inequalities.
literacy.4
The contract to deliver this Widening Digital
Recognising the importance of this challenge,
Participation programme has been let to the
the NHS England business plan32 includes the
leading digital inclusion and skills agency, the
following commitment: ‘Reducing inequalities:
Tinder Foundation (www.tinderfoundation.org).
100,000 citizens trained in basic online skills to
boost health literacy (by April 2014).’
17Health Literacy 12 Summary of breakout group discussions In considering issues around health literary, around specific outcomes, what will make the three breakout groups were set up. These groups biggest difference, what we can expect to change considered the role of the GP and professionals, and how this should be measured, when we the role of the commissioner and the role of can expect it to happen, key stakeholders, if the patients and the public. A framework to extra training is needed, tools needed and a key consider any future work was defined: issues research question in relation to their area. GPs and healthcare professionals In considering the role of GPs and professionals, to the patient that what is being checked is the the discussion was very rich. The group decided doctor’s ability to communicate well, rather that the theme was to centralise the idea that than the patient’s ability to understand. Key HCPs need to be able to assess, recognise, stakeholders would include those responsible support and improve the health literacy of for under- and postgraduate training. Training people as an integrated part of clinical practice will be needed to build in the idea of trust, and prioritise those most in need (for example, compassion and reciprocity. Toolkits will be those with language barriers or multi-morbidity). needed and the group talked about using videos HCPs also need to measure change by feedback and peer review. Research questions could be and checking patient understanding of key based around developing an assessment of messages from the consultation, emphasising consultations or be linked to effectiveness. Health service commissioners In considering the role of health service networks were thought to be of importance, commissioners, the key themes that emerged which would lead to trust. The challenge for included making information accessible and commissioners is to equate the evidence to the advocacy, with support leading to better health benefits. outcomes. Motivated and activated community Patients and the public In discussing the role of patients and the public, provided before and after a consultation, role key themes and ideas included the development models, peers, role of data, and availability of of test sites, extension of the friends and family tools to confirm patients’ awareness of options. test to include health literacy, the right to take Also of importance was making information an advocate with you, the amount of time accessible before and after the consultation, the allowed in a GP consultation, information value of role models, peers and patient leaders, 18
Health Literacy
and availability of tools to confirm patients’ accessibility of different forms of information
awareness and understanding of their healthcare (leaflets, video, etc.), ascertaining whether
options. The need for patients to be asked if they people accessing lifelong learning to build health
understand what is being presented to them literacy skills feel more confident about talking
was important and this highlights good practice. to health professionals, and determining what
The idea is to develop a culture change with percentage of people leaving the GP consultation
patients as active partners in care. There are clear or other settings understand options and
research needs around assessing the impact and information.
19Health Literacy
13 Conclusions and call for action
Two key themes are described at the beginning literacy and learn to develop consultation
of this report: the need for making more effective techniques to improve the clarity of their
use of resources and the central role of GPs in communication with patients with low health
accomplishing this by improving their own literacy and support patients to develop their
communication skills, and tailoring information health literacy skills.
to not only patient health literacy but also clinical 3. To develop recommendations for Clinical
need. Commissioning Groups (CCGs) to consider
health literacy approaches by NHS service
Health literacy is a complex, multifaceted providers when commissioning services.
concept, but one that has real impact on patients, 4. To develop pilot sites where CCGs can
doctors and the NHS. The problems brought by commission health literacy training for
low health literacy are many, and affect all areas patients from adult learning providers, with
of health and health care. By working together assessment of the impact of these pilots on
to develop a five-year plan, building on the ideas patient skills, patient satisfaction with NHS
of the key stakeholders present at the England services and their use of NHS services.
seminar, the RCGP and NHS England can lead
5. To ensure that those aspects of the Digital
the way in addressing some of the important
Inclusion Strategy relevant to general practice
issues raised by health literacy, resulting in more
are highlighted to GPs.
effective, more patient-centred care in the NHS.
6. NHS England in particular to work with the
Information Standard to develop a health
This report calls for action for GPs to play their
literacy guide to be circulated to all NHS
part in addressing the issues raised by low health
Trusts.
literacy in England. A five-year plan should be
developed by the RCGP, in partnership with We believe that the development and
NHS England, to address the following areas. implementation of such a five-year plan could
transform the landscape of health literacy in
1. To work with the Health Literacy Group UK England through development of a health-
to ensure that national health literacy policy literate health system accessible to all, and
recommendations include those arising from empowered, health-literate patients can work
the July 2013 workshop and this report. with GPs and NHS England to shape the NHS
2. To influence GP training so that all GPs that England needs.
recognise the issues caused by low health
20Health Literacy
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22Health Literacy
Appendix I
Group members and their affiliations
John Ballat Partner, People in Systems Author of Intelligent Kindness
Health Inequalities Forum,
Roger Banks Chair Academy of Medical Royal
Colleges
Jonathan Berry CHL Foundation
Alpa Bisarya Business Manager Hurley Group
Jabeer Butt Deputy Chief Executive Race Equality Foundation
Dominic Edwardes Health Improvement and Marketing Director Terrence Higgins Trust
Agatha Ferrao Health Literacy Lead Department of Health
Bob Gann Patients and Information NHS England
Clare Gerada Chair of Council RCGP
Sheena Gibson Curriculum Development Committee RCGP
Jo Giles Generate UK
Head of Clinical Innovation and Research
Chris Gush RCGP
Centre
Adrian Hegenbarth Research Fellow RCGP
Helen Jones Chief Executive Leeds GATE
Tim Kelsey National Director Patient Information NHS England
National Clinical Lead for Self-Management
Graham Kramer Scottish Government
and Health Literacy
Alice Lau Health Inequalities Standing Group RCGP
Graham Martin Health Inequalities Standing Group RCGP
Samantha Meikle Programme Director Improvement Science London
Luke O’Shea Head of Patient Participation NHS England
Henry Pares IT Directorate NHS England
David Paynton National Commissioning Lead RCGP
GP and Health Literacy Researcher Keele University
Joanne Protheroe
Co-Chair, Health Literacy Group UK SAPC/RCGP
Chair of Clinical Innovation and Research
Imran Rafi RCGP
Centre
Laura Robinson Policy and Communications Adviser National Voices
Gill Rowlands Co-Chair of Health Literacy Group UK SAPC/RCGP
Bernd Sass Strategic Partnership Manager Disability Rights UK
Adrian Sieff Assistant Director Health Foundation
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