Health Literacy Report from an RCGP-led health literacy workshop

 
Health Literacy Report from an RCGP-led health literacy workshop
Health Literacy
Report from an RCGP-led health literacy workshop

                                                   June 2014
Health 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......................................................................................25
Health 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.
                                                                                                       v
Health 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.

vi
Health 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.

                                                                                                            1
Health 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

2
Health 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
                                                                                                          3
Health 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
                                                                                                       5
Health 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.

6
Health 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.

                                                                                                            7
Health 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.

                                                                                                        9
Health 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.

10
Health 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.

                                                                                                         11
Health 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

12
Health 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.

                                                                                                            13
Health 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

                                                                                                        15
Health 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

16
Health 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).’

                                                                                                           17
Health 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.

                                                                                                        19
Health 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

20
Health Literacy

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Health 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
                                                                                                  23
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