Interested in health literacy and improving digital accessibility within the NHS? Check out our slides from our recent Health and Social Care event.

3. Why is health literacy important and how will
improvement benefit the NHS and Society?
Dr Joanne Protheroe
Chair of Health Literacy UK

4. West Gorton Medical Centre

5. Content
1. What is Health Literacy?
2. Why is it important?
3. How big is the ‘problem’?
4. What can we do?

6. 1. What is health literacy?
“the personal characteristics and social
resources needed for individuals and
communities to access, understand, appraise
and use information and services to make
decisions about health.”
World Health Organisation, 2015

7. What is health literacy?
“the personal characteristics and social
resources needed for individuals and
communities to access, understand, appraise
and use information and services to make
decisions about health.”
World Health Organisation, 2015

9. Literacy is context and content specific
More accurate to talk about literacies for
example:
financial literacy,
Media literacy,
IT literacy (new literacy) and,
health literacy

10. 2. Why is it important?
• Has been shown to have an effect on:
– Health knowledge
– Self-care skills
– Health attitudes and beliefs
– Health behaviours
– Global health outcomes

11. Logic model
Berkman et al, 2011

12. Health
Literacy
Level

13. Knowledge and
Accurate Risk
Perception

14. Skills:
• Take Medications
• Self-monitoring
• Recognize Emergency
• Seek Additional Health
Information
• Access care

15. Use of Health Care Services:
• Emergency Room Visits
• Office Visits
• Hospitalization
• Prevention
Health Outcomes:
• Disease
• Disease Severity
• Quality of Life
• Death

16. Health literacy affects patients’ ability to…
• discuss health information/medical concerns with
healthcare providers
• engage in self-care and disease management
• navigate their way through the healthcare system
• act on medical-related information
• adopt and maintain a healthy lifestyle

17. Low health literacy = problems with
• Pill bottles
• Appointment slips
• Informed consents
• Discharge instructions
• Patient/health education
materials
Medication
Take as directed
Dr. Literate

18. Mismatched communication
Provider process Giving information
Patient process
Understanding,
remembering, and
acting on information

20. Variability in the Message…
Take one tablet
orally once every
day.
Take one tablet orally once every day.
Take 1 tablet by mouth every morning
53 Different Ways to Say ‘Take 1 Tablet a Day’53 Different Ways to Say ‘Take 1 Tablet a Day’
53 Different Ways to Say ‘Take
1 Tablet a Day’Take one tablet for cholesterol.Take 1
tablet 1
time daily.Take 1 tablet 1 time daily.
Take one tablet by mouth once daily.
Take one pill by mouth at bedtime
Take one pill by mouth once each day.
Take one pill by mouth
nightly.
Bailey, et al., Annals of Pharmacotherapy, 2009

21. What we know
▪ Use of preventive services
▪ Delayed diagnoses
▪ Understanding of medical condition
▪ Adherence to medical instructions
▪ Self-management skills
▪ Risk of hospitalisation
▪ Physical and mental health
▪ Mortality risk
1800 +
studies

22. Low HL – increased risk
mortality in older adults:
‘After adjusting for personal
characteristics, socioeconomic
position, baseline health, and
health behaviours, the
hazard ratio for all cause mortality for participants
with low health literacy was 1.40’

23. 3. How big is the ‘problem’?
• 35% US population basic or below basic skills (NALS 2003) –
only 12% ‘proficient’
• >60% Canadians do not have necessary skills to manage
health (CCL, 2008)
• Similar in Australia (59%) (Australian Bureau of Statistics,
2006)

24. National picture
• Health information is too complex
for 43% of people aged between
16 and 65 years
• The figure rises to 61% when the
information also requires maths
skills
Rowlands, Protheroe et al, BJGP 2015

25. England
• There are 34.1 million adults in England aged 16 – 65
years
• This means that between 15 – 21 million people of
working age across the country may not be able to
understand and use the information they need to look
after their health

26. 4. What can we do?
What is a health literacy intervention?
• Health literacy as a risk
• Interventions to change Health System to take HL into account ‘Universal
Precautions’
• Health literacy as an asset
• Interventions to increase the Health Literacy of a population
• All of above?

27. • Report commissioned by
Public Health England
• Attempt to summarise
effective HL interventions
and strategies in England –
2015

28. Report concluded:
• Efforts to improve HL – range of benefits: increase
knowledge & build resilience; encourage positive lifestyle
change; empower people to effectively manage health;
decrease burden on health and social care resources
• More evidence needed

29. Health Literacy interventions
/ initiatives defined as:
• A strategy, programme or initiative that may contribute to HL
of individuals by:
– Strengthening individual skills
– Simplifying, clarifying health information and systems
– Or engaging underserved, disadvantaged or vulnerable
groups through general literacy or health literacy
interventions

30. • The report categorised types of interventions
/ initiatives into 4 main groups
• List the groups and give examples from my
own research and practice in Stoke-on-Trent

31. Stoke-on-Trent

32. Stoke-on-Trent
• The health of people in Stoke-on-Trent is generally worse
than the England average
• Deprivation is higher than average and about 27.5% (13,600)
children live in poverty
• Education attainment is lower than the England average
• Life expectancy for both men and women is lower than the
England average

33. Four categories of interventions:
1. Health and social care service use of simple
teach-back method to check service user
understanding

34. Example – Stoke Health Literacy
Training & Awareness Courses
•GP’s and other GP practice personnel
•Pharmacists
•Dentists
•School Teachers and other educators
•Participatory Art Group leaders
•Social Workers
•Local Authority planners and commissioners
•Fire Service professionals

35. – What health literacy is and why it is important
– How it can impact in practice
• Patient/service user difficulties in
– Attending appointments
– Taking medication
– Understanding about their condition
– Self-managing their health
– Tools professionals can use to help
• ‘Teach back’1
• ‘Check & chunk’
Course Content
1. Teach-back: 2015.

36. • 285 practice staff trained in the last year, of whom 70
were GPs
• Half-day or full-day course
Information from the Community Health and Learning
Foundation
http://www.chlfoundation.org.uk

37. 2. An early intervention approach to HL –
ensuring fully integrated into early years and
school curricula as well as in health and
social care professional training

38. Example – Stoke Speaks Out
Early Year’s Story Boxes
3 Using health literacy knowledge, the projects:
• Immerse children in health related vocabulary in a play based and multi-sensory
way
• Provide children with a core foundation of vocabulary on which to build later
learning
4 Health Literacy resource boxes have been created:
• Going to the Dentist
• Going to the Hospital
• Going to the Doctors
• Healthy Eating

39. Example – medical undergraduate teaching
• Health Literacy lecture as part of Public Health
teaching – to second year medical students,
Keele University Medical School

40. 3. Community-based , peer support approaches
to HL that help to distribute HL among social
networks

41. Example - The Cultural Sisters
• A participatory arts organisation with a
focus on Arts and Health, engaging with
people using creative processes to
explore and learn about health and
wellbeing issues
• Health literacy concepts have been
embedding into project development,
enabling people to help each other and
themselves

42. 4. Empowering professionals through
continued education and inter-disciplinary
initiatives to improve HL and strengthen
public-professional communication

43. Example - Quality Improvement
Framework
• National requirement for local health commissioners - public health topic and
targets locally determined
• Practices receive incentive payments for participating and achieving targets
• In 2016-2017 one of the QIF areas in Stoke is health literacy
• Use clinical audit to improve clinical advice and patient self-management
plans through improved health literacy of the practice environment and of the
patient population, recognising that one cannot be improved without the
other

44. Report key messages:
• The available evidence suggests that strategies to improve
health literacy are important empowerment tools which have
the potential to reduce health inequalities because the most
vulnerable and disadvantaged people in society are at risk of
limited health literacy and are known to have the poorest
health outcomes
Improving health literacy to reduce health inequalities, PHE 2015

45. • Health literacy is important with a significant impact on morbidity and
mortality
• Low health literacy central to health inequities
(marginalised groups, low SE and low education most at
risk)
• Interventions aimed at improving HL:
– Increase knowledge & build resilience
– Encourage positive lifestyle change
– Empower people to effectively manage health
– Decrease burden on health and social care resources
Summary

46. Questions?
j.protheroe@keele.ac.uk
www.healthliteracy.org.uk

48. www.sense.org.uk
The Accessible
Information
Standard
Sarah White @sarahmwhite88 Sarah.White@sense.org.uk

49. www.sense.org.uk
What is the
Standard?

50. www.sense.org.ukwww.sense.org.uk
What is the Standard?
• With partners, NHS England has developed a new ‘Accessible Information
Standard’.
• The aim of the Standard is to make sure that people who have a disability or
sensory loss get information in the right format for them, and any support they
need to communicate.
• The Standard tells organisations that provide NHS or adult social care services
how they must do this.

51. www.sense.org.ukwww.sense.org.uk
Why do we have the Standard?
• The Equality Act 2010 says that all service providers must make
“reasonable adjustments” to support disabled people – including
providing information in “an accessible format”.
• BUT we know that people with communication needs often get
information that they cannot read or understand and do not get the
communication support they need.

52. www.sense.org.ukwww.sense.org.uk
The 5 steps of the Standard
• Identify
• Record
• Flag
• Share
• Meet

53. www.sense.org.uk
What does it
mean?

54. www.sense.org.ukwww.sense.org.uk
For people using services
"The scope of the standard extends to individuals (patients and
service users, and where appropriate the parents and carers of
patients and service users) who have information and / or
communication support needs which are related to or caused by a
disability, impairment or sensory loss.“

55. www.sense.org.ukwww.sense.org.uk
For people using services
Under the Accessible Information Standard individuals can specify if they need:
• To be contacted in a certain way (e.g. via email instead of the phone)
• To receive information in a different format (e.g large print)
• Communication support for appointments (e.g. a BSL interpreter or
communicator-guide)
• If they use additional support to communicate (e.g. hearing aids or lipreading).

56. www.sense.org.ukwww.sense.org.uk
For commissioners & providers
“By law, all organisations that provide NHS care of adult social care
must follow the Standard in full from 31st July onwards. Organisations
that commission NHS care and/or adult social care must also support
implementation of the Standard by provider organisations”

57. www.sense.org.ukwww.sense.org.uk
Resources
• NHS England - https://www.england.nhs.uk/ourwork/accessibleinfo/
• Sense – www.sense.org.uk/ais
• Equal Access to Healthcare report – www.sense.org.uk/healthreport

59. “i na he kahanalu.”
59

60. 60
“Everybody
have a boogie.”

61. About us
We are a leading national
and international human
rights organisation led by
disabled people.
This means that most of our
trustees are disabled people.
About us

62. • Shaun’s Story: no accessible
information on his Diabetes diagnosis.
• Joanne’s Story: no accessible
documents to register at her new GP
service.
• My story: no accessible information on
parenting and becoming a mother.
62
Three stories

63. When there is no accessible
information for people with
learning disabilities, it will impact
on:
• our choices
• our feelings
• our sense of power and control
63
Impact of accessible information

64. What is
accessible
information?
64

65. Accessible Information
65

66. Accessible information is information that people
can understand.
Accessible information means different things to
different people.
Accessible Information
At CHANGE, we think about people that find
reading and writing hard.
66

67. Easy Words and Pictures has writing in short,
simple sentences, without any hard words or
jargon.
For us, accessible information means Easy
Words and Pictures.
Easy Words and Pictures
It is really important that the images show the
true meaning of the words.
67

68. What happens if information is not
made accessible to people?
68

69. 69

70. 70

71. 71

72. What do we mean by ‘jargon’
and ‘hard words’?
72

73. Professionals use jargon words to communicate with
each other, such as Venue (place), Investigate (test) and
Examine (look at).
Hard words are words that are not used in everyday
conversation, such as Review (check), Contemplate
(think about) and Annual (every year).
‘Jargon’ and ‘Hard Words’
73

74. How we work at CHANGE
74

75. How we Work at CHANGE
The ‘Words to Pictures’ team, our
quality checkers with learning
disabilities, and the Accessible
Information Team, our illustrators,
work together on the design of the
Easy Read information.
75

76. Including People with Learning Disabilities
People with learning disabilities
are the experts on accessible
information - we know what
works for us and what does not
76

77. We employ people with learning
disabilities.
When a person with learning
disabilities and a person without
learning disabilities work
together on the same project, it is
called co-working.
Including people with learning disabilities.

78. We have made lots of things!
Parenting Collection Supporting Parents with Learning
Disabilities –
Good Practice Guidance
Image subscriptions -
1,000s available online
We have made lots of things!

79. We have made lots of things!
Cancer Series
Sexuality Collection
How to Make Information
Accessible Guide
We have made lots of things!
Independence Pack for people with
intellectual impairments leaving
Assessment and Treatment Units

80. • CHANGE has thousands of images that we can share with you
on our Easy Read Doc creator.
• You can find it on our website: :
http://www.changepeople.org/gallery/easy-doc-creator
• We’d love to work with you, please get in touch!
80
Easy Read Doc Creator

81. 81

82. Do you have any questions?
82

83. 83
Tel: + (44) 0113 242 6619
Email: info@changepeople.org
Web: www.changepeople.org
Facebook: www.facebook.com/changepeople
Twitter: www. twitter.com/#!/changepeople_

86. millions of people are in need of help

88. 1 in 14 UK citizens speak English as a second language
30% of doctors
40% of nursing staff
Source: Independent

94. from literacy to life

105. Victoria Baird
International Business
Manager
tel: 877-778-6977
email: v.baird@texthelp.com
web: www.texthelp.com
twitter: #TexthelpWork

107. Widening Digital Participation
Nicola Gill– Programme Manager

108. Our challenge
108
• Over 12m people lack basic digital skills (57% of over 65s, 49% of people
with disability)
• Over 5m people in UK (10% of population) have never been online
• Those who are least likely to be online are those who most need health
& care services
• Low health literacy closely linked to poorer health outcomes & mortality
• Information & services are increasingly digital - digital skills are
increasingly essential to health literacy & access to services

109. Strategic context
109
NHS Five Year Forward View
• Build the capacity of all citizens to access information
• Develop partnerships with the voluntary sector and industry to support digital inclusion
Personalised Health & Care 2020
• Ensure that the digital opportunity is inclusive
• Build better insight into the barriers to digital inclusion
Martha Lane Fox recommendations to National Information Board
• Focus on reaching the furthest first and leave no-one behind

110. What have we done already?
110
• Widening Digital Participation (WDP): three year NHS England
programme 2013-16
• Worked with social enterprise Tinder Foundation (now called Good
Things Foundation) to provide national digital skills training programme
• Digitally excluded people engaged through local UK Online Centres in
deprived communities

111. • Evaluated over the three year programme using quantitative & qualitative
methods
• Good evidence of benefits realised for individuals & the health & care
system
• Positive outcomes include increased confidence, more self care &
greater use of online health services
What did we achieve?

113. 48% saved time 32% saved money 1 in 3 made less trips to the doctors
Read more about the previous WDP programme at http://nhs.tinderfoundation.org/

114. What are we doing now? Phase 2
Key objectives for the new programme are to:
• Develop models for effective local partnerships for tackling digital
exclusion through supporting local pathfinders
• Work with digital delivery teams to ensure that digital health services are
inclusive
• Create and communicate evidence on how best to support groups which
are currently digitally excluded
• Build partnerships with other digital engagement initiatives in
government, industry & voluntary sector
• Embed digital inclusion in NHS systems & processes eg. planning,
performance management & incentives
114

115. What’s different about Phase 2
• We’ve learnt from phase 1
• It’s not all about digital skills
• Or around mass training programmes
• Focus on health inequalities - connecting with the hardest to reach, the
furthest first
• Motivation and activation are key
• Innovation and new ideas
• Data-driven evidence based approaches
115

116. How will we prioritise our work
• An evidence based approach
• Data-driven analysis to understand the cross over between digital
exclusion and health inequality
• Mapping of digital exclusion heatmaps against indicators of local health
inequalities
• The needs of the most digitally excluded will be prioritised – reaching the
furthest first
116

117. London
Airedale, Wharfedale
and Craven CCG
Bassetlaw
CCG
Fylde & Wyre
CCG
Bradford City
CCG
Bradford Districts CCG
Doncaster
CCG
Dudley CCG
Blackpool CCG
Hastings and Rother CCG
Knowsley CCG
Mansfield and
Ashfield CCG
Northumberland CCG
Redditch and
Bromsgrove CCG
South Sefton
CCG
South Tees CCG
Southend
CCG
St Helens CCG
Stockport CCG
Stoke on Trent CCG
Sunderland CCG
Telford and Wrekin
CCG
Trafford CCG
Wakefield CCG
Walsall CCG
Wigan Borough CCG
CCGs with high digital
exclusion and high health
inequality
CCG name
Digital
exclusion
score
Absolute
gradient of
inequality
Sunderland CCG 8.94 1,450
Wigan Borough CCG 8.84 1,048
Wakefield CCG 8.74 1,022
Stoke on Trent CCG 8.64 1,307
Walsall CCG 8.64 1,315
Blackpool CCG 8.58 1,816
Knowsley CCG 8.55 1,640
Hastings and Rother CCG 7.99 1,103
Bradford City CCG 7.97 1,903
Northumberland CCG 7.94 1,350
Bradford Districts CCG 7.91 1,158
Telford and Wrekin CCG 7.90 969
Southend CCG 7.90 976
South Sefton CCG 7.89 1,537
Redditch and Bromsgrove CCG 7.88 1,139
Stockport CCG 7.82 1,422
Dudley CCG 7.73 1,088
Trafford CCG 7.72 1,126
Airedale, Wharfedale and Craven CCG 7.02 1,036
St Helens CCG 6.16 1,029
Mansfield and Ashfield CCG 5.99 1,119
Doncaster CCG 5.98 1,117
Bassetlaw CCG 5.98 1,012
Fylde & Wyre CCG 5.60 1,083
South Tees CCG 5.52 1,131

118. What is a Pathfinder?
……an experimental plan or forecast
• synonyms: pioneer, trailblazer, ground breaker, experimenter,
trendsetter, front runner, leader…
• New models of working that are tailored to an area or group of people
• Motivate and support people to access digital health info and services
• Through local organisations who work everyday with the people we need
to reach e.g. housing, charities, local authorities etc
• And involving local health organisations e.g CCGs, health centres, GPs,
NHS vanguard & test bed projects etc
• Embed digital health inclusion in communities
118

119. What will success look like?
The outcomes of the programme will include:
• Number of citizens engaged
• Digital skills improved (using GDS digital inclusion scale)
• Health & care organisations engaged
• Activation of individuals (including decision making & self care)
• Impact on frontline services (including increased use of digital services &
reduced use of primary or urgent care)
• Sustainability of digital inclusion activity at local level (embedding in
health & social care commissioning & provision)
119

120. Where are we now
• Delivery partner has just been announced as the
Good Things Foundation
• 2 digital inclusion pathfinders to start in March in
London (Islington) and Sheffield
• 6 more by March 2018
• Health inequality & digital exclusion mapping
• User needs research – homeless people
• Digital Inclusion guide for commissioners
120

121. Thank you
Questions? Feedback?

123. www.england.nhs.uk
Patient and Public
Participation and
Insight
Our work and impact
in partnership
@ScottDurairaj
Scott Durairaj
Programme Delivery Director
Nursing Directorate
NHS England

124. www.england.nhs.uk 124

125. www.england.nhs.uk
Our aim
To empower people and
communities to be in control
of their own health and
wellbeing

126. www.england.nhs.uk
Delivered via our core objectives:
126
1. Embedding experience-led commissioning
2. Establishing supported self management as a new operating
model for the health service – including testing and
evaluating through Vanguard sites
3. Empowering people and communities to help shape the
direction of NHS England
4. Empowering people and communities to help shape the
NHS
5. Promoting equality and reducing health inequalities

127. Reach and
impact
What difference does this
work make to our
patients, carers and
community?

128. www.england.nhs.uk

129. www.england.nhs.uk

130. www.england.nhs.uk

131. Key areas of focus for our teams
Priorities moving
forward

132. www.england.nhs.uk
SSTP Themes
132
1. Prevention & Early Diagnosis
2. Mental health and other services
3. Productivity and variations in
care
4. Workforce
5. Developing Enablers – Incl IT
6. Supportive Organisations
7. Acute and Community Hospitals
8. Primary Care & Acute
Kings Fund Delivering Sustainability and
Transformation Plans

133. www.england.nhs.uk 133
Embed models of self-care
interventions and build momentum for
the programme among patients and
their carers, professionals and the
public via vanguards and STP’s and
regional activities
Responding to the changing
needs of the system by offering
direct support and delivery to
STP areas; providing expertise
and practical support where and
when its needed, focus on
delivering current standards
and mandates
Further develop the testing and
delivery methodologies of our
range of surveys and insight
activities to encourage better
representation and engagement
from underrepresented groups
Development of the Involvement Hub,
Participation Academy and People
Bank, to further strengthen NHS
England’s public participation

134. www.england.nhs.uk 134
Learn from and build upon the Workforce
Race Equality Standard:
The Workforce Race Equality Standard has
published its annual report in June last year
and soon will be providing the second
years report, providing a unequivocal
national state of play
Workforce Disability Equality Standard through
the NHS Standard Contract from April 2018 with
a preparatory year from 2017-18 to improve the
treatment, progression and experience of
disabled staff in the NHS and encourage
organisations to view disability as an asset,
embracing staff who have lived experience of
disability and long term conditions.
Data to inform action:
Development of a Unified Information
Standard for all protected groups with
the piloting of the Sexual Orientation
Monitoring Standard underway from
September 2016.

135. www.england.nhs.uk
Its what we
deliver that
matters

136. www.england.nhs.uk 136
A ‘once in a generation opportunity’ to
improve disabled people’s healthcare
A ‘game changer’
‘The biggest
change to Deaf
health that
England has ever
seen’
‘A step change in
patient
communication
across the NHS’
‘The most
radical
change
since 1948’
Accessible Information Standard
• All providers of NHS care or publicly-
funded adult social care must (since 1st
August 16) follow the Standard in full by
identifying, recording, flagging, sharing
and meeting the information and
communication needs of people with a
disability or sensory loss.
• Welcomed and promoted by stakeholders,
supported by NHS Digital, CQC, RCP
amongst many others.
• Three years in development – coproduced
with disabled people and representative
organisations throughout.

137. www.england.nhs.uk 137
• The Co-production Model is a practical tool which
supports organisations to work towards fulfilling the
direction in Chapter 2 of The Five year Forward
View “ .. a new relationship with patients and
communities ..” and the key themes of:
• Empowering patients
• Engaging communities
• The NHS as a social movement
• The model acknowledges that when co-production
works well, the approach can create the culture
change needed to help organisations to achieve
person-centred, personalised and empowering care.
The work of the co-production model group is jointly hosted by NHS England and
the Coalition for Collaborative Care.
Co-production model

138. www.england.nhs.uk 138
Promoting Equality and Reducing Health Inequalities
NHS England Equality and Health Inequality Unit
have worked with Professor Cookson and his
research team at the University of York to develop
an online tool to pinpoint inequalities within CCGs.
Available at: http://www.ccg-inequalities.co.uk/

139. www.england.nhs.uk 139
Tackling Access Barriers driving stark health
inequalities for marginalised groups
Homeless people are 5 times less likely to be registered with a GP than the
general population. The homeless, gypsy travellers, vulnerable migrants, ex-
offenders and those in drug and alcohol recovery cannot always provide the
paperwork requested by doctors surgeries and may struggle to register with
a local GP as a consequence.
NHS England have developed and published new Standard Operating
Principles for Primary Medical Care
https://www.england.nhs.uk/commissioning/wp-
content/uploads/sites/12/2015/11/pat-reg-sop-pmc-gp.pdf to be
accompanied by ‘patient-facing’ registration leaflets.
The Equality and Health Inequalities Unit have supported members of these
patient groups to develop leaflets addressing the particular challenges faced,
outlining rights to registration and explaining how to register with a doctor
(GP) with a note to the GP Practice asking them to assist in registering the
person in accordance with the new guidelines.

140. www.england.nhs.uk 140

141. www.england.nhs.uk
Thank You & Questions
Scott Durairaj
Programme Delivery Director
Nursing Directorate
NHS England
scott.durairaj@nhs.net
141