Presentation slides from PHE Screening national inequalities conference November 2019

1. Events team plan

2. Welcome address
Professor Anne Mackie, Director of Screening, Public Health England

3. Aims of the day
3 PHE Screening Inequalities Conference - Welcome address
share information
on the actions
PHE Screening is
taking to tackle
inequalities in
screening
share information
on the actions that
those involved in
the delivery of
screening are
taking to tackle
inequalities
seek expert input into
what further practical
steps we should take
to support service
providers to address
screening inequalities

4. Questions
1. What will you change in your practice/service
as a result of today?
2. What successes have you had in addressing
health inequalities in screening?
4 PHE Screening Inequalities Conference - Welcome address
3. What new learning have you gained today?
4. Who should we work with more in future to
have a wider impact?

5. PHE Screening inequalities strategy
5 PHE Screening Inequalities Conference - Welcome address
Published May 2018.
User feedback May 2019.

6. Aims of the strategy
6 PHE Screening Inequalities Conference - Welcome address
• address the unwarranted and unfair barriers that may mean people don’t
participate in screening when, after due consideration, they would wish to
• support PHE Screening in discharging its professional and legal
commitment to reduce inequalities, ensure equitable access to screening
• support our partners involved in the delivery of screening

7. Who experiences screening inequalities?
7 PHE Screening Inequalities Conference - Welcome address
Economic
deprivation
Minority
ethnic
groups
Learning
or physical
disabilities
Serious
mental
illness
Other protected
characteristics

8. 8 PHE Screening Inequalities Conference - Welcome address
Percentage of eligible cohort men screened for AAA and percentage of aneurysms
detected by IMD 2010 decile, 1 April 2018 to 31 March 2019

9. Ethnicity rate vs cervical coverage by CCG
PHE Screening Inequalities Conference - Welcome address
50
55
60
65
70
75
80
85
0 20 40 60 80 100
Percentage coverage
Percentage black and minority ethnic groups
Age 25 to 49
Age 50 to 64
Standard
Linear (Age
25 to 49)
Linear (Age
50 to 64)
9 PHE Screening Inequalities Conference – Welcome address

10. Cervical coverage by CCG vs deprivation
PHE Screening Inequalities Conference - Welcome address10 PHE Screening Inequalities Conference – Welcome address

11. Breast cancer screening: age and learning
disability
11 PHE Screening Inequalities Conference - Welcome address

12. What we’re doing
12 PHE Screening Inequalities Conference - Welcome address
Strengthening
the evidence
base
FIT
implementation
Data tools Data sharing Cervical
screening
campaign
Sharing best
practice
Screening
standards
High quality
public
information
QA
Quality
assurance
Health equity
audit toolkit

13. What have we achieved?
13 PHE Screening Inequalities Conference - Welcome address
Positive force
for change
Raised profile
of inequalities
Encouraged
sharing

14. What more can we do?
14 PHE Screening Inequalities Conference - Welcome address
tools & resources
shared forum
collaboration
dissemination
data analysis

15. Questions
1. What will you change in your practice/service
as a result of today?
2. What successes have you had in addressing
health inequalities in screening?
15 PHE Screening Inequalities Conference - Welcome address
3. What new learning have you gained today?
4. Who should we work with more in future to
have a wider impact?

16. Events team plan
Evidenced-based practice to address
screening inequalities
Professor Stephen Duffy, Professor of Cancer Screening,
Centre for Cancer Prevention, Queen Mary University of London

17. Screening inequalities
Much of the focus is on cultural and socioeconomic factors
Poorer coverage in deprived areas
Poorer coverage in certain ethnic groups
Mainly seen as a health behavior issue
We think in terms of ‘nudges’ or health education interventions in
response
17 Evidenced-based practice to address screening inequalities

18. Exceptions
Health inequalities
Is the screening accessible to those with disabilities or comorbidities?
Low social support is associated with lower participation
Smoking is associated with lower participation
Geographic issues
Are mobile units appropriate for a given area and if so, where should
they go?
Are there issues relating to the programme rather than the invitees?
We will return to this
18 Evidenced-based practice to address screening inequalities

19. What works in terms of improving
uptake?
From our review, effective invitee-targeted measures include:
Primary care endorsement
Additional reminders (by various media)
Personalised reminders
Culture- and language-sensitive educational interventions
Advance notice
All of these have been observed to work at least equally well in deprived and
underserved populations as in affluent groups. An example is Tower Hamlets
breast screening.
19 Evidenced-based practice to address screening inequalities

20. Addressing inequalities- ASCEND1
Randomised trials (randomised by hub-day rather than individual), within the
bowel screening programme, of
Supplementary key information leaflet
Supplementary narrative leaflet
GP endorsement
Enhanced reminder
Specific interest in comparing effects by IMD quintile.
20 Evidenced-based practice to address screening inequalities

21. ASCEND1- Primary care
endorsement
IMD quintile % uptake usual
care
% uptake GP
endorsement
OR (95% CI)*
1 (least deprived) 66.0 65.2 1.04 (0.99-1.08)
2 62.6 63.1 1.06 (1.02-1.10)
3 58.0 59.3 1.08 (1.03-1.13)
4 51.5 53.0 1.09 (1.04-1.15)
5 (most deprived) 42.6 44.0 1.07 (1.01-1.13)
Overall 57.5 58.2 1.07 (1.04-1.10)
21 Evidenced-based practice to address screening inequalities
* Adjusted for age, sex, hub and screening episode

22. ASCEND1- Enhanced reminder
IMD quintile % uptake usual
care
% uptake
enhanced
reminder
OR (95% CI)*
1 (least deprived) 34.9 34.9 1.00 (0.94-1.06)
2 29.7 30.8 1.04 (0.98-1.11)
3 25.0 26.8 1.13 (1.06-1.20)
4 20.4 21.1 1.09 (1.02-1.17)
5 (most deprived) 13.3 14.1 1.11 (1.04-1.20)
Overall 25.1 25.8 1.07 (1.03-1.11)
22 Evidenced-based practice to address screening inequalities
* Adjusted for age, sex, hub and screening episode

23. Remarks
Both enhanced reminder and GP endorsement show an increased uptake, but
the effect is very small
Both suggest a stronger relative effect in more deprived populations, but again,
the difference is small in absolute terms
The adjusted effect is greater than the raw effect, due to issues with the cluster
randomisation
23 Evidenced-based practice to address screening inequalities

24. Observation from review0
1020304050
Increase
20 40 60 80
Baseline
24 Evidenced-based practice to address screening inequalities
Increase in participation by
baseline participation rates,
reminders and GP
endorsement.
The lower the baseline, the
larger the increase
(generally).

25. Remarks
‘Nudge’ interventions tend to have effects of the order of 2-5% in populations
where participation is already high (60%+), 10-20% where it is low (50% or
less).
If resource available, it is worth doing and is unlikely to exacerbate inequalities.
If resource limited, apply only in areas of low participation (better return for
investment).
25 Evidenced-based practice to address screening inequalities

26. But is it an invitee issue or a
programme issue?
The old guaiac FOBT test required two samples from each of three separate
stools.
FIT requires a single sample.
The FIT pilot suggests an 8-10% increase in participation with FIT.
Bigger than we could achieve with nudges at a baseline of around 60%.
Strongest effect in previous non-responders
26 Evidenced-based practice to address screening inequalities

27. Participation in all three
programmes
Rebolj’s recent study shows that in women eligible for all three of the breast,
bowel and cervical screening programmes:
90% participated in at least one programme
Only 35% participated in all three
The high participation rate in at least one programme suggests that the low
participation rate in all three is not due to an objection to or apathy about
screening per se.
Suggests that there are issues of acceptability within each programme.
27 Evidenced-based practice to address screening inequalities

28. Programme-based interventions
Change to FIT in bowel cancer screening
Availability of HPV self-sampling in cervical screening
Second timed appointments for non-attenders at first offered screen in breast
screening programme
22% vs 12% in those not attending first offered appointment (Allgood
et al, 2017)
Mix of nudge and programme factor
28 Evidenced-based practice to address screening inequalities

29. What else can we do?
For breast screening, the basic test has to remain mammography, and as a
three-yearly X-ray, it is already a “light touch” intervention. However, we can:
Improve the experience- quick throughput
Consider aspects of provision- siting of mobile units etc.
Defend the programme when it is attacked
29 Evidenced-based practice to address screening inequalities

30. Accessing data – an IG primer for inequalities work
Dr J Kevin Dunbar, Regional Head of Quality Assurance, Public Health
England

31. Information Governance is Important
31

32. What this will cover
Aims
1) Understand what the rules are for processing data
2) Understand where you need to be careful in your planning
Prevent GDPRalysis!
32

33. IG Definitions
Personal Data
Any information relating to an identifiable person who can be directly or indirectly
identified in particular by reference to an identifier such as including name,
identification number, location data or online identifier.
Anonymisation
Data that cannot be used to identify a person. Two standards apply – ICO and ISB.
Data controller
Is a person/organisation who (either alone or jointly or in common with other
persons) determines the purposes for which and the manner in which any personal
data are to be processed.
Duty of Confidence
An obligation to keep information confidential – don’t share it, don’t publish it.
33

34. Not a lawyer
Inequalities and data
34

35. GDPR – Data Protection Act 2018
All data processing must be:
Lawful - you must have a basis in law for what your doing
Transparent – being clear, open and honest with people from the start about
who you are, and how and why you use their personal data
Fair – only handle personal data in ways that people would reasonably expect
and not use it in ways that have unjustified adverse effects on them
35

36. Legal Basis
Need to have one of the 6 legal bases set out in GDPR
Consent,
contract,
compliance,
vital interests,
public task,
legitimate interests.
Certain types of data (special category) require further conditions
36

37. Special
Categories
Protected
Characteristics
37

38. Protected Characteristics vs Special Category
age
disability
gender reassignment
marriage and civil partnership
pregnancy and maternity
race
religion or belief
sex
sexual orientation
38
race;
ethnic origin;
politics;
religion;
trade union membership;
genetics;
biometrics (where used for ID
purposes);
health;
sex life/ sexual orientation.

39. Presentation title - edit in Header and Footer
“is necessary for the purposes of identifying or keeping under review
the existence or absence of equality of opportunity or treatment
between groups of people specified in relation to that category with
a view to enabling such equality to be promoted or maintained”
39

40. Caldicott
40
The Review Panel heard that the use of such data for commissioning
purposes would be legitimate because …In return for receiving
treatment, the patient would be agreeing to allow data to be used by the
health and social care system for a variety of purposes including those
under the umbrella of commissioning.
The Review Panel does not support such a proposition.

41. Legal Basis vs Duty of Confidence
PHE
Section
251
Data
Duty of Confidence
Section 251 approval for service delivery or research is granted by the
Health Research Authority Confidentiality Advisory Group

42. Key Questions
Do you need identifiable data?
Who is the data controller?
What’s my legal basis?
Will identifiable data need to be shared across organisational
boundaries?
Do I need S251 approval?
42

43. Do I need identifiable information?
• Using anonymised data is preferable. If it’s anonymous GDPR controls don’t
apply!
• We are legally required to minimise personal data processing where possible.
• You should only need identifiers to link records or contact specific people.
Who controls the data?
• The data controller is accountable for the data release. They will be responsible
for the process of releasing data.
• Data controllers will also have to meet transparency requirements and publish
risk assessments (Data Protection Impact Assessments)
Does the work require extracts from national data systems?
• Controllership is not always obvious, seek advice from system managers
43
Information Governance Primer

44. Is the data being shared with or accessed by people not involved in
their care?
• Can you get patient consent?
• If patients can not reasonably be consented then apply to HRA CAG
If shared, are you familiar with the data release process?
• PHE data - contact Office of Data Release
• NHS Trusts will have their own data release protocols
Are patients being made aware that this is happening to their data?
• Even if you have section 251 approval -you still need to make patients aware
44
Information Governance Primer

45. Sharing Data for Screening Appointments
Scenario: The NHSE commissioner wants to extract bulk data on disability
status to ensure that patients get the right care. The disability status will be
shared with a service that the patient has not yet consented to attending.
45
Do you need identifiable data? Yes – you need to link data
Data Controller? GP in all likelihood, possibly NHSD
Legal Basis Public Task, specifically addressing
inequalities (not consent)
Does it involve sharing across
boundaries?
Yes, from GP to screening service – so will
need S251 approval or consent
Who is responsible for
transparency/risk assessment?
Data controllers

46. Sharing Data for Direct Care
Scenario: The NHSE commissioner wants to extract bulk data on disability
status to ensure that patients get the right slot. The disability status will be
shared with a service that the patient has not yet consented to attending.
Summary: bulk sharing will require a CAG application or consent* from each
patient
*under GMC guidance there is implied consent for direct care under certain
circumstances
46

47. Summary
• Inequalities work is enshrined in IG law
• Processing data should wherever possible be done with anonymous data
• If you want to share identifiable data with anyone who doesn’t already have
access you will need to rely on consent OR to seek S251 approval from the
HRA CAG
• In all cases data controllers should be meeting the transparency
requirements of GDPR
47

48. Screening data supporting the inequalities work
Radoslav Latinović, National Screening Data and Information Lead, Public
Health England

49. How to produce screening standards
• Reducing health inequalities is a priority for PHE, the Department of Health
and Social Care and NHS England
• When producing standards you should consider whether you can include
one that will help identify and address inequalities as well as respecting an
individual’s right to make a personalised informed choice
• You will also need to consider the potential impact of the standard, which
may be positive or negative
• Standards may be around identifying the eligible cohort, accessing
screening services at any point along the pathway or referral for treatment.
• They may also be directly or indirectly related to inequalities
49 PHE Screening - Screening data supporting the inequalities work

50. How to produce screening standards II
Range of dimensions, such as socio-economic deprivation and personal
characteristics like ethnicity, age and gender.
Consider if relevant data:
• Is available or if it can be collected
• Can be extracted
• Needs to be linked to any other dataset
• Can be reported and in what format this would be
50 PHE Screening - Screening data supporting inequalities work

51. How to produce screening standards III
A standard that relates to a large number of people, for instance deprivation or ethnic
group, may be a lesser burden to collect and report upon compared to a standard that
focusses on a small number, for instance transgender
Examples include:
• coverage of screening in the most deprived tenth of local areas
• slope index of inequality in uptake of screening (difference between most deprived
and least deprived tenth of areas)
• percentage of repeat non-attenders for routine screening or referral appointments
• timeliness of offer of pre-natal diagnosis (SCT-S05)
• completeness of data collection, for example ethnic group
• ethnicity by LSOA for areas with high rates of non-attendance or low uptake
51 PHE Screening - Screening data supporting inequalities work

52. PHE Screening data
Data collection is integral to all screening programmes and a wealth of data is
available to inform policy-making and research.
PHE are responsible for ensuring data collected nationally and locally is
managed in accordance with DP and IG requirements
It is essential that research, evaluation and audit is feasible, of high quality and
protects the safety of patients
Any research activity must be undertaken in line with current legislation and
guidance. Access to data sets comprising identifiable or potentially identifiable
screening data or tests requires appropriate legal gateway assurances.
52 PHE Screening - Screening data supporting inequalities work

53. Research Advisory Committee (RAC)
Objectives:
• support and advise the programmes in relation to research, evaluation and
audit requests to benefit screening
• ensure that research, evaluation or audit does not adversely affect the
uptake, acceptability and delivery of the programmes
• review the scientific merit and feasibility of research, evaluation and audit
applications, and requests for data, and their impact on the programmes
• determine which research, evaluation and audit applications will have
access to individuals invited as part of the programmes
• produce recommendations for action following consideration of applications
https://www.gov.uk/guidance/nhs-population-screening-data-requests-and-research
53 PHE Screening - Screening data supporting inequalities work

54. How to apply
• Submit research application by email to: screening.research@phe.gov.uk.
• Applications reviewed at programme-specific research advisory committee
(RAC) if required
• Applications reviewed by PHE Office of Data Release (ODR) if required
6 screening RACs – one generic email address
54 PHE Screening - Screening data supporting inequalities work

55. Application
process
flowchart
55
PHE Screening - Screening data
supporting inequalities work

56. Data varies by programme and indicator
AAA – Age, gender, LSOA. Ethnicity is collected at appointment so may not be
complete
Breast – Age, gender and postcode are recorded on NBSS. It is possible to
record ethnicity at point of contact but not monitored/complete
Bowel – Age, postcode (residential & registered), gender, GP, CCG, LA (upper
& lower), ethnicity and deprivation using census estimates
Cervical – Age and postcode on NHAIS, GP, CCG, LA
DES – Age, ethnicity, gender, disability, religion marital status, sexual
orientation are available in local programme IT systems but not reported to the
national team – may not be complete. GP2DRS (where used): postcode, sex,
age, GP, first language, diagnosis of diabetes, consent to transfer information
56 PHE Screening - Screening data supporting inequalities work

57. Data varies by programme and indicator II
FASP – collect aggregate data; NCARDRS may include demographic
IDPS – collect aggregate data; outcomes project includes some demographics
SCT – collect aggregate data; outcomes project includes some demographics
NHSP – postcode, gender, GP, CCG; ethnicity not mandatory on the system
NIPE – postcode, gender, GP, CCG; ethnicity not mandatory on the system –
incomplete data
NBS – collect aggregate data; further info on screen positive babies
57 PHE Screening - Screening data supporting inequalities work

58. Data lake?
58 PHE Screening - Screening data supporting inequalities work

59. Events team plan
Screening equalities in a digital world
Nick Johnstone-Waddell, Public and Professional Information Lead,
Screening, Public Health England
Richard Denyer-Bewick, Operations Director, Citizens Online

60. Screening equalities in a digital world
Nick Johnstone-Waddell and Rich Denyer-Bewick

61. The government’s digital vision
61 Screening equalities in a digital world
Affordable
high speed
broadband
Digital skills UK world
leader
Power of
data

62. Digital approach for screening invitations
62 Screening equalities in a digital world
phase
Antenatal and
newborn
screening leaflet
phase
Young person
and adult
screening leaflets
phase
Young person
and adult
screening letters

63. 63 Screening equalities in a digital world

64. User research
64 Screening equalities in a digital world
Surveys In depth phone
interviews
Focus groups 1:1 discussions

65. Antenatal and newborn focus groups
65 Screening equalities in a digital world
Everything’s
online now
Confident
accessing
online info
Women get
bombarded
with leaflets
Physical
leaflets get
lost
Convenient
At the
push of a
button
I trust
information
on GOV.UK
It’s never an
issue accessing
the internet, even
hospitals have
WIFI

66. Antenatal and newborn focus groups
66 Screening equalities in a digital world
Not everyone has
internet/phone
Some people
aren’t confident
using online info
Just personal
preference to
receive paper
version
Easy to get
confused with
misleading info
from other
websites
Limited
data/signal/connection
I would like the
information in my
own language
not English

67. Incident invitationsPrevalent invitations
Example of a woman invited for breast screening…
Non-digital safety nets
67 Screening equalities in a digital world
53
Accept
56
Accept
59
DNA
62
Accept
50
DNA
Age

68. PHE Screening blog
68 Screening equalities in a digital world
phescreening.blog.gov.uk
to subscribe

69. Digital Inclusion since 2000 -
Independent, charitable organisation
-
Diverse communities around UK -

70. Six million people
in the UK (11%)
cannot turn on a
device
Lloyds Consumer Digital Index 2019
7.5% of adults (4 million) have never used the
internet

71. Digital Exclusion - Profile
Older
Disabled
Low Income

72. Switch
The extent of UK digital
exclusion
Of the 0.8 million
adults who had last
used the internet
over three months
ago, 0.4 million
were disabled
Source: Office For National Statistics 2019

73. Switch
The extent of UK digital
exclusion
16% of
benefits
claimants are
Digitally
Disengaged
(Lloyds Consumer Digital Index
2019)
Source: Lloyds Consumer Digital Index 2019

74. Switch
The social value of digital
inclusion• Reduced health
inequalities
• Social inclusion
• Financial capability
• Improved customer
service
• community
cohesion
• tenant engagement
• organisation
efficiencies

75. Switch
Questions we’re trying to
answer• Which groups of people are most impacted by
channel shift?
• Screening programme target groups
• Protected Characteristics
• Where do they live?
• What are the impacts?
• What actions can be taken to mitigsate the
risks?

76. Switch
Digital Exclusion & Diabetes

77. Switch
Combined Rank:
• Durham Dales
• North Cumbria
• Scarborough & Ryedale
• Bradford (City & Dist)
• Southport & Formby
• Bassetlaw (Notts)
• Lincolnshire East
• Leicester City
• Wolverhampton / Dudley
• North Norfolk
• Brent
• Cornwall
• Isle of Wight

78. 1. Connect to internet
2. Go to: menti.com
3. Enter code: 32 91 24

80. Switch
Next steps
• Now! - Online Survey: your feedback
• Nov 19 - Design Stage – dialogue with
PHE and development of
recommendations
• Dec 19 – Draft findings and
recommendations
• Feb 20 – final assessment report produced

81. Events team plan
Working with the cancer alliances: a collaborative
approach to improving screening uptake across the
South West
Dr Jon Roberts, Consultant in Public Health, Screening and Immunisation, South West,
Public Health England

82. NHS England and NHS Improvement

83. NHS England and NHS Improvement

84. NHS England and NHS Improvement

85. NHS England and NHS Improvement

86. NHS England and NHS Improvement

87. NHS England and NHS Improvement

88. NHS England and NHS Improvement

89. NHS England and NHS Improvement

90. NHS England and NHS Improvement

91. Cancer Screening
Directory
Purpose: To record customised interventions and impact,
Time period: Last three years (2016-19)
Geographic coverage: South West
What we were seeking:
• Projects that addressed structural barriers and increased
uptake
• Customised methodologies that targeted specific sub
groups with lower uptake
• Interventions that are socially and culturally appropriate to
the sub group (e.g. in terms of ethnicity, socio –economic
status and gender )
• Approaches that foster onward engagement and / or deploy
a personalised approach.
• Educational and media programmes

95. SW Screening GIS Mapping
Tool
Purpose: Map and layer up regional characteristics to
show age / sex, deprivation levels, ethnicity, and
intervention projects, and overlay metrics detailing
uptake by tumour site (age and practice)
Time period: Last three years (2016-19)
Geographic coverage: South West
What we were seeking:
• To create a visual tool to highlight screening
inequalities and support targeted intervention
support strategy development ,and funding
allocations at all levels (PHE, CA, STP, CCG, PCN)

96. test

97. test

98. test

99. test

100. test

101. test

102. test

103. test

104. test
Summary
• Identification of areas of lowest uptake
• Cross reference with population health and
socioeconomic demographics
• Targeted interventions
• Primary Care Network - localise approach
• Improved relationships between key partners

105. Events team plan
Workshop A: Improving access to screening for
members of the LGBT community
Harri Weeks, Stakeholder Engagement Manager, National LGB&T Partnership

106. PHE Screening Inequalities Conference
11th November 2019
Improving access to screening for
members of LGBT+ communities

107. Aims of the session
o Learn about LGBT+ health inequalities and
terminology
o Discuss NHS Screening Programmes and the
impact on LGBT+ people
o Show how services can be inclusive
o Have the opportunity to ask questions and
broaden your understanding

108. What does LGBT+ mean?
o LGBT+ is an umbrella term
o Often used by people who identify as Lesbian, Gay, Bisexual or
Trans
o “+” inclusive of sexual identities and gender identities which are
out of the LGBT acronym, such as Queer or non-binary
o LGBT+ overarches many terms people use to identify their sexuality
or gender
o Trans is itself an umbrella term, encompassing many identities
Tip: an LGBT+ Terminology Guide will be being published
by The National LGB&T Partnership this month.

109. Sexual Orientation
Sexual orientation refers to a person’s romantic and/or sexual attraction to
another person.
Examples include:
Gay: Someone who is sexually,
romantically or emotionally attracted to
people of the same gender
Straight: Someone who is sexually,
romantically or emotionally attracted to
people of the opposite gender
Bisexual: Someone who is sexually,
romantically or emotionally attracted to
people of more than one gender
Lesbian: A woman who is sexually,
romantically or emotionally attracted to
other women
Asexual: The lack of sexual attraction to
others, or low or absent interest in or
desire for sexual activity
Pansexual: Someone who is sexually, romantically or
emotionally attracted towards people regardless of
their sex or gender identity

110. Gender is often expressed in terms of masculinity and femininity, gender is largely culturally determined and is assumed from
the sex assigned at birth in a binary system: male or female.
Examples include:
Gender
Trans: An overarching term used to describe anyone
whose gender is not the same as the gender they were
assigned at birth.
Cisgender/Cis: Someone who identifies with the
gender they were assigned at birth; someone who
is not transgender.
Trans woman: A woman who was
assigned male at birth
Intersex: A person whose biological sex
characteristics don’t fit into the binary medical
model of male and female. This can be due to
differences in primary and secondary sex
characteristics including external and internal
genitalia, hormones, and/or chromosomes.
Trans man: A man who was
assigned female at birth
Non-binary: Used to describe those whose gender
does not fit into the gender binary. The term can
be used by some as an identity in itself and is also
used as an overarching term for genders that don’t
fit into the gender binary, such as genderqueer,
bigender and gender-fluid.

111. Trans Status
o Trans is an umbrella term; it refers to someone’s gender not sexual
orientation
o Someone might identify as trans when their gender is not the gender
they were assigned/given at birth
o Some trans people may choose to access medical transition:
treatment such as hormone replacement therapy, chest
reconstruction (top surgery), genital reassignment surgery (bottom
surgery)
o Some trans people may choose not to or may not be able to access
medical transition

112. Pronouns
o Pronouns are the gendered words we use to describe
people
o They include he/him, she/her, they/them
o Pronouns can be important in reinforcing and affirming
somebody’s identity and help them to feel respected
and valued as a person
o If you accidently misgender someone, apologise, and
correct yourself, ensure to use the correct pronouns for
future
o Consider also words like ‘lady’ & ‘man’ that might be
used to refer to ‘that lady over there’, and whether you
can use more neutral terms.

113. Pronouns: Tips
o You don’t always need to know someone’s pronouns
immediately – it’s possible to use a person’s name or
structure sentences differently
o They/them is an acceptable neutral term we use
regularly in our daily lives
o You can’t assume someone’s pronouns from looking
at them
o Offering your own pronouns, including in your
signature, shows you understand the need to
get them right.

114. Why does this matter?
Health Inequalities for LGBT+ people
LGBT people are disproportionately affected by
health inequalities such as:
o Higher rates of smoking and drinking
o Obesity (also lack of physical activity and evidence of eating
disorders such as bulimia and anorexia in gay men)
o Less likely to visit GP within 7 days of noticing any symptoms
mainly due to fear of being judged, worries around “coming
out” to the GP particularly if they are part of the older LGBT
community
o Higher rates of poor mental health - anxiety, stress,
low mood, low motivation to attend screenings

115. Cervical Screening

116. What we do know:
LGB women and Cervical Screening
Prescription for Change (Stonewall, 2008)
o 1 in 5 LGB women had been told by a
Healthcare Professional they were not
at risk of cervical cancer
o 1 in 50 LGB women who attended their
screen, were refused by a healthcare
professional due to their sexuality
Are You Ready for Your Screen Test? (LGBT
Foundation in association with the University of
Salford and the NHS National Cancer Screening
Programmes, 2013)
o 51% of LGB women of an eligible age have never
had a test, or not had one within the
recommended time frames
o 40% of LGB women in the study had been told
they did not require a test due to their sexual
orientation
o 14% of the women asked, had been refused a
test or actively discouraged from having a test by
a healthcare professional

117. Trans men and other trans people assigned female at birth and Cervical
ScreeningAll trans people with a cervix should attend for cervical screening, however…
“I attended my smear and was the only man in the room. I was
asked on several occasions if I was lost, or at the wrong clinic. I
was so embarrassed that I left before having my smear. I have
not had one since.” Anonymous, trans male
If someone has changed their gender
marker to male at the GP, they will be
removed from the cervical screening
programme & not be invited for
screening
Fears or concerns about attending
for a cervical screen in a
predominately female-orientated
environment can prevent
attendance
Lack of awareness of the need
for trans inclusion can lead to
increased risk of a more
physically uncomfortable
experience, and one of
heightened stress and anxiety

118. Patient Experience: Cervical Screening and
heteronormative assumptions
“I was trying to be all responsible about my health by going
for a smear and the first question was ‘are you sexually
active?’ and I said YES, then they asked what contraception
are you using and I said I’m not using any and they said ‘are
you trying to get pregnant then?’ NO.
Then it was a tirade: ‘do you know how irresponsible you’re
being and how at risk you are of all sorts of disease and if
you’re not trying for a baby then you really need to be using
contraception,’ she went on and on like that and I was
actually really frightened. In the end I said I don’t sleep with
men I only sleep with women and she physically recoiled and
was shocked and she said, well, you don’t need a test… and
they packed me off.”
Karen, lesbian woman, 30
Taken from, Are You Ready
for Your Screen Test?
(LGBT Foundation, 2013)
Share your initial thoughts or feelings
with your neighbour.
Who’s ‘side’ do you find yourself on?
What happens when you put
yourself in the other person’s
shoes?

119. Breast Screening

120. What we do know: Breast Screening
and LGBT+ Communities
There is limited evidence of the extent of breast screening coverage among
the LGBT community (PHE, 2018)
o 4 in 5 lesbians over the age of 50 have attended their breast screening
invitation, which is similar to heterosexual women (Stonewall, 2008)
o Trans women taking oestrogen may be of increased risk of breast cancer,
but will not be routinely invited for screening if their gender marker is
“male” on their records
o Many breast health awareness messages are delivered to women when they
attend clinics for contraception or cervical screening – therefore LB women
and trans men with breast tissue may be less aware
(Macmillan, 2018)

121. Trans men and other trans people assigned female at birth
and Breast/Chest Screening
This group has the same risk of breast cancer as cisgender women.
It is important to ask about language:
a trans person might not be
comfortable with the word breast, &
may prefer chest.
Eligible for breast/chest
screening, regardless of if they
have had top surgery (bi-lateral
mastectomy)
If someone has changed their
gender marker to male at the
GP, they will be removed from
the cervical screening
programme & not be invited
for screening

122. Chest Binding and Breast Screening
o Chest binding, ‘wearing a binder’, is the done to flatten the
appearance of the chest, and involves compressing the breast tissue.
o Associated risks include pain/discomfort, muscle weakening, rib
fractures and the change of shape of the breast tissue.
o People who bind may be uncomfortable with or reluctant to self-
check, particularly if they view their chest as a reminder of their
assigned birth gender (gender dysphoria).
o Chest binding makes it more difficult to assess for lumps or changes
in the tissue and around the nipple as the binder can cause skin
irritation. It is easy to assume pain in the breast/chest area could be
caused by binding.

123. NHS Breast Screening:
Helping you decide (Last
updated Feb 2019)
PHE Breast Screening
Programme campaign
(2013)
National Breast Screening Campaigns
With the person next to you,
spend 5 minutes discussing these
breast cancer screening
campaigns.
What are your first
impressions?
What do you notice when you
look closer?
How do you personally feel
about them?

124. AAA Screening

125. Trans and non-binary people and AAA Screening
For a trans woman or a non-binary person, there may be a heightened sense
of anxiety around this procedure:
o There may be concerns or anxieties of attending a “male” clinic
o Trans people in particular may not be comfortable with exposing their
abdomen, they may have a heightened sense of awareness around their
chest area and worries that the screener may see or ask questions around
this area of the body
Issues around gender marker changes:
o If trans women have changed the gender marker on their records
to female they will not receive an invitation for AAA Screening
despite having the same risk as cisgender men
o If trans men have changed their gender marker to male – they will
be automatically enrolled and invited for AAA Screening

126. o Eligible people are potentially missing out on AAA screening
which might lead to late diagnosis of aneurysms and poorer
health outcomes.
o Trans men and non-binary people assigned female at birth may attend
for an unnecessary appointment which might lead to confusion and
anxiety for the patient and for the healthcare provider.
o Guidance states trans men and non-binary people can opt out of the
AAA screening programme, and trans women can opt in to the
programme.
o However, this involves a conversation disclosing their trans or non-
binary status which may not be the most appropriate solution
Trans and non-binary people and AAA Screening:
Consequences

127. Bowel Screening

128. Bowel Screening
o There is currently no evidence in regards to
health inequalities LGBT+ communities and
bowel screening.
o This may be due to the fact the bowel
screening is not gender-specific, and is self-
taken, so there may be fewer health
inequalities.
o More research is needed into this area to
expand the evidence base.

129. What can services do to
ensure inclusivity?

130. Language
o Use inclusive language such as “partner” rather than
assuming “husband or wife”.
o Anyone might attend with a friend or partner – you can
ask “who have you brought with you to support you today?”
o Ask “how would you like me to address you?” – This question can be used
for all patients – not everyone goes by their legal name, do they Jo?
o Avoid using pronouns or gendered descriptive terms, or if you need to,
check in (with everyone) which they’d rather.
o If relevant, ask “what is your sexual orientation?” rather than presuming.
o Ask what language would they prefer to use to describe their body.
o Amend demographic forms to be gender inclusive and ask trans status –
LGBT Foundation have guidance on this.

131. o Awareness of the needs and experiences of all patients
that access the service.
o Raises awareness to all staff that there are LGBT+ patients, therefore reduces
the risk of making heteronormative assumptions.
o Gives trans and non-binary patients the opportunity to discuss their screening
needs, and ensure they receive the appropriate invitations and advice.
o Healthcare practitioners can support trans and non-binary patients through
the screening process – reduces the risk of trans patients not being invited to
screening.
o Adds to the evidence base so research can be done to address LGBT+ health
inequalities, improve services and drive policy changes.
Monitoring of sexual orientation and trans status

132. Dignity and Respect
LGBT+ people may have heightened anxieties attending appointments, they may have
fears around having to expose their body, attending a “male” or “female” clinic, worries
about being judged for or having to explain their trans status or sexual orientation.
What changes can be made to improve the patient journey?
Examples might include:
o Offering appointments at quieter periods such as the start or end of a clinic
o Offering to show patients around the clinic before appointments (if time allows
during non-clinic hours)
o Having pre-exam discussions with the patient, giving them the opportunity to ask
questions – building a relationship between the screener and the patient to ease
anxieties and to increase likelihood of attendance
o Visible LGBT+ inclusive signs and literature

133. o Gives staff an opportunity to discuss their anxieties in a non-judgemental
environment.
o Staff become familiar with gender-neutral and inclusive language.
o Staff will have knowledge of who is eligible for which screening
programmes.
o Reduces risk of LGBT+ service users being turned away from screens.
o Gives staff the confidence to explain why screenings are important if a
LGBT+ patient believes they do not need screening due to their sexual
orientation and/or trans status.
o Increases understanding about issues which the community may face.
o Improve relationships with service users.
o LGBT+ people are more likely to attend their screening or use a service if
they feel they are in a safe and welcoming environment.
The importance of LGBT+ awareness training for staff

134. Any Questions?

135. Contact information
For more information, please contact:
Harri Weeks – The National LGB&T Partnership
harri.weeks@lgbtconsortium.org.uk
For information about sexual orientation, gender and trans
status/history monitoring: www.lgbt.foundation

136. References
o Department of Health, (2014), Healthy lifestyles for lesbian, gay, bisexual and trans (LGBT) people, accessed at;
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_
consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_078345.pdf (last accessed May
2019)
o LGBT Foundation, (2014), Are you ready for your screen test?, accessed at https://lgbt.foundation/screening
(last accessed May 2019)
o Macmillan, (2018), The Emerging Picture: LGBT people with cancer, accessed at;
https://www.macmillan.org.uk/_images/lgbt-people-with-cancer_tcm9-282785.pdf (last accessed May 2019)
o Macmillan, (2017), No-one Overlooked, accessed at
https://be.macmillan.org.uk/Downloads/CancerInformation/LivingWithAndAfterCancer/MAC15365LGBTNo-
one-overlooked--experiences-of-LGBT-people-affected-by-cancer.pdf (last accessed May 2019)
o Public Health England, (2018), Information for trans and non-binary people: NHS Screening Programme,
accessed at;
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/814364/S
creening_information_for_trans_and_non_binary_people.pdf
o Public Health England Blog, (2019), Reducing cervical screening inequalities for trans people, accessed at;
https://phescreening.blog.gov.uk/2019/04/10/reducing-cervical-screening-inequalities-for-trans-people/

137. Events team plan
Workshop B: 'My choice too' - providing equitable
cancer screening for people with a learning disability
Julie Tucker, Macmillan Project Manager, North East and Cumbria Learning Disability
Network
Suzie Fothergill, Self Advocate, Skills for People
Donna Johnston, Project Worker, Skills for People

138. “My choice too”
Providing equitable cancer services for
people with a learning disability
Suzie Fothergill, Project worker, Skills for People, Newcastle
upon Tyne
Julie Tucker, Cancer Project Manager, NE & C Learning
Disability Network

139. What is a learning disability?
A significantly reduced ability to understand new or complex
information, to learn new skills
A reduced ability to cope independently which starts before
adulthood with lasting effects on development.
Department of Health. Valuing People: A New Strategy for Learning Disability for the 21st Century. 2001

140. Health Inequalities for people
with learning disabilities
Higher rates of mortality and morbidity
Proportionally higher rates of gastrointestinal cancer
Significantly lower uptake rates across all screening programmes of people
with learning disabilities
Those with a diagnosis of cancer they are less likely to:
◦ be informed of their diagnosis and prognosis
◦ be given pain relief
◦ be involved in decisions about their care
◦ to receive palliative care
Confidential Inquiry into Premature Deaths of People with Learning
Disabilities http://www.bris.ac.uk/cipold/

141. LeDeR Mortality review
Looks at the deaths of people with a learning disability
LeDeR annual report - http://www.bristol.ac.uk/media-
library/sites/sps/leder/LeDeR_Annual_Report_2018%20published%20May%202019.pdf
North East confirm and challenge group -
https://inclusionnorth.org/wp-content/uploads/2019/06/Response-to-2019-Leder-report.pdf
Learning into Action – Report on LeDeR Reviews
Involving a Cancer Diagnosis
Amelia Randle - Clinical Lead SWAG Cancer Alliance

142. quiz
?

143. quiz
What percentage of the population is estimated as having a learning
disability?
◦ A. 1%
◦ B. 2%
◦ C. 5%
?

144. quiz
What percentage of the population is estimated as having a learning
disability?
◦ A. 1%
◦B. 2%
◦ C. 5%
?

145. quiz
What percentage of the total population are flagged on the GP
system as having a learning disability?
◦ a. 0.6%
◦ b. 1%
◦ c. 1.6%
?

146. quiz
What percentage of the total population are flagged on the GP
system as having a learning disability?
◦a. 0.6%
◦ b. 1%
◦ c. 1.6%
?

147. quiz
How many years younger does the average person with a learning
disability die?
◦ a. 11 years
◦ b. 19 years
◦ c. 27 years
?

148. quiz
How many years younger does the average person with a learning
disability die?
◦ a. 11 years
◦ b. 19 years
◦ c. 27 years
?

149. quiz
What is the average reading age of adults in the UK?
a. 9 years
b. 12 years
c. 15 years
?

150. quiz
What is the average reading age of adults in the UK?
a. 9 years
b. 12 years
c. 15 years
?

151. Sharing learning
• Share information on projects
• Share learning
• Share ideas
• Share contacts

152. Sharing learning
Bowel
screening
Breast screening Cervical screening Non-cancer
(state)
………………………….
.
Project title Bowel screening flagging protect
Key contact (name and email) Julie Tucker, Julie.tucker11@nhs.net
Happy to share email
address and project info
(please tick)
Yes No

153. Sharing learning
Projects aims To provide a pathway enabling people with a
learning disabiltiy to be offered support to make
informed choices regarding their bowel screening
invitation.
Bowel screening hub and screening centre, CLDT,
CCG leads for learning disability and cancer, CRUK
facilitator, project lead
Key partners?

154. Sharing learning
What went well?
Rolled out across North East
Over 1000 people flagged
Excellent partnership working
Co-ordinating and engaging partners
Consent to share information
How to guide
http://www.northerncanceralliance.nhs.uk/wp-
content/uploads/2019/06/LD-bowel-flagging-how-to-
guide.pdf
Challenges?
Other information

155. Sharing learning
• Share information on projects
• Share learning
• Share ideas
• Share contacts

156. Julie.tucker11@nhs.net
T: 0113 824 9693
M: 0786 0177 981

157. Events team plan
Workshop C: Improving access to screening by changing the
screening pathway in sickle cell and thalassaemia screening
Denise McLeggan, Commissioning Manager, SCT Screening, London, Public Health England
Lucy Smith, Commissioner, Antenatal and Newborn Screening, London, NHS England and
NHS Improvement

158. Background
158

159. Aims and Objectives of Audit
159
Aim:
To determine the robustness of the SCT screening pathways for timely referral into maternity care, offer of
maternal and paternal screening and offer of PND across London maternity providers.
Objectives:
To ensure timely offer of antenatal booking and screening by maternity services and subsequent referral to
specialist health care professional with specialist training in genetics, if applicable
To ensure all women/couples are offered genetic counselling
To ensure timely offer of PND
Identify variances in quality outcomes between the different genetic counselling service delivery models
To determine if the SCT standards are being met
Standard 2. Timeliness of antenatal screening test
Standard 5. Timely offer of PND to women/couples at risk of having an affected infant
Standard 6. Timeliness of PND
Standard 7. Timely reporting of PND results to parents
Identify gaps in the antenatal screening pathway

160. What we did – audit all maternity providers
160

161. Referral routes to antenatal care
161

162. Knowledge of carrier status by parity
First pregnancy Subsequent
pregnancy
Total
SCT status
known
66 194 260
SCT status not
known
114 106 220
180 300 480
162

163. Fast tracking of known carriers
163

164. Gestation at first presentation
164

165. Time from referral to first appointment
165

166. Timeframe from maternal screening to father
screening
166

167. Variation in father testing uptake by service
provision
167

168. Gestation at offer of Pre-natal Diagnosis
168

169. Impact of gestation on acceptance of PND
169

170. Time from PND procedure to informing
parents of result
170

171. Pregnancy outcomes
171

172. ST2 KPI Timeliness of test by regions
2014/15 and 2018/19
172

173. Recommendations
• Maternity referral forms
• Direct referral and fast tracking
• Guidelines/SOP’s
• SCT genetic counselling
• Review screening pathway
• Re - audit pathway
173

174. Events team plan
Workshop D: Access to cancer screening for people
with severe mental illness
Alex Jones, Public Health Intelligence Analyst, Public Health England
Dr Gabriele Price, Head of Intelligence, Mental Health, Public Health England

175. Contents
➢ Introduction
➢ Why are we looking at access to cancer screening for people with Severe
Mental Illness (SMI)?
• Discussion 1
➢ Methodology, initial results and challenges
• Discussion 2
175 Assessing cancer screening inequality experienced by people with SMI

176. Introduction
The Vision of National Mental Health Intelligence Network (NMHIN)
‘Putting data and informatics into the hands of decision makers to provide the
intelligence needed to improve mental health and well-being across England’
1. Data set investigation – to provide new intelligence
2. Product & tool development – to enable use of intelligence
3. Dissemination & training – to tell people products are there and help them
to use them
4. Co-ordinate across partners – to work effectively, collectively, and reach as
many people as we can.
5. Our purpose (the reason for doing the above) is to support and enable local
intelligence based decision making
176 Assessing cancer screening inequality experienced by people with SMI

177. Introduction
Structure of this session
• Two presentations
• Two discussion sessions
• Online feedback forum
• Crib sheets and post it notes available
177 Assessing cancer screening inequality experienced by people with SMI

178. Introduction
Who is in the room?
• Which of the organisations do you represent?
CCG, Provider, GP, NHS England, Public Health England, Public Health in local
government, volunteer sector organisation or other …
• Do you have experience of work relating to cancer screening in people with
SMI or other disadvantaged population groups?
178 Assessing cancer screening inequality experienced by people with SMI

179. Why are we looking at access to cancer screening
for people with SMI?
1. Premature mortality in people with SMI
2. Physical health inequalities in people with SMI
3. Health behaviours in people with SMI
4. Cancer prevalence & outcomes in people with SMI
5. ‘The big picture’
179 Assessing cancer screening inequality experienced by people with SMI

180. Health improvements in older
population e.g. heart disease
treatment
Premature mortality in people with SMI
People with SMI are at a greater risk
of poor physical health and have a
higher premature mortality than the
general population. People with SMI
in England:
• die on average 15 to 20 years
earlier than the general
population
• have 3.7 times higher death rate
for ages under 75 than the
general population
• experience a widening gap in
death rates over time
180 Assessing cancer screening inequality experienced by people with SMI
Female: 82.8
Male: 79.0
Female: 71.5
Male: 66.4
Female: 62.9
Male: 58.7
Health Improvements in
young population e.g.
childhood immunisation

181. Premature mortality in people with SMI
It is estimated that for people with SMI, 2 in 3 deaths are from physical illnesses
that can be prevented.
Excessmortalitybydiseasegroup-peopleagedunder75incontactwithmentalhealthservices
comparedtothegeneralpopulation (England,2014/15)
181 Assessing cancer screening inequality experienced by people with SMI
Disease
group
Mortality rate - times higher* Mortality rate - more deaths per
100,000 population*
Liver 5 84
Respiratory 4.7 147
Cardiovascular 3.3 198
Cancer 2 142
* people under 75 years of age in contact with mental health services compared to the general population

182. Physical health inequalities in people with SMI
182 Assessing cancer screening inequality experienced by people with SMI
Prevalence(age,sexanddeprivationstandardised)of
physicalhealthconditionsforSMIandallpatientsaged
15to74years
Age-specificprevalenceofphysicalhealthconditionsfor
SMIpatientsandallpatientsaged15to74years

183. Health behaviours in people with SMI
183 Assessing cancer screening inequality experienced by people with SMI
• high prevalence of health behaviours, such as smoking, poor diet,
lack of exercise, and substance misuse
• multiple risk behaviours rather than one health risk factor at a time
• side effects of antipsychotic medication, including weight gain
• difficulties in accessing treatment; for example, lack of intervention
following conditions diagnoses
• disconnected and irregular approach to health and care provisions,
and other support

184. Cancer prevalence & outcomes in people with
SMI
• A growing body of research is looking at
the relationships between SMI and
cancer
• Evidence on the relationship between
SMI and cancer prevalence is mixed with
many studies suggesting no significant
difference
• Looking at cancer prevalence alone may
not present the whole picture in terms of
health inequality
• People with SMI show excess premature
mortality for cancer
• Case fatality of cancer is commonly
higher in people with SM
• Cancer treatment differs by socio-
demographic characteristics – higher
prevalence of SMI in more deprived
areas is recorded
• Factors associated with diagnosis,
progression and treatment of disease are
likely to play a role
184 Assessing cancer screening inequality experienced by people with SMI

185. ‘The big picture’
• PHE Strategy 2020 to 2025
• PHE Screening inequalities strategy
• ‘One PHE approach’
• NHS Long Term Plan
• Physical Health Checks for people with Severe Mental Illness Collection
➢ How can the screening community help?
185 Assessing cancer screening inequality experienced by people with SMI

186. Discussion 1
• What is your experience of SMI population accessing cancer screening
programme and how do you engage with this group?
186 Assessing cancer screening inequality experienced by people with SMI

187. Methodology
• There are three national cancer screening programmes in England:
• Bowel cancer screening (home testing kit sent to men and women aged 60-74, every two years)
• Breast cancer screening (women aged 50-70 invited to screening every 3 years)
• Cervical cancer screening (women aged 25-49 invited to screening every 3 years, women aged 50-64 invited
every 5 years)
• We conducted a matched cohort comparison using The Health Improvement Network (THIN)
primary care data set.
• Active patients within the 1809 THIN extraction were split into those with a record of SMI and those
without. SMI was identified using the QOF list of read codes or a record of lithium prescription.
• Each patient with a record of SMI (and who was eligible for one of the screening programmes) was
randomly matched with 6 patients without a record of SMI (but of the same gender, 5-year age
category and GP).
187 MHIN: Assessing cancer screening inequality experienced by people with SMI

188. Methodology
• Each patient’s records were checked for records of the relevant cancer screening within the
relevant time frames (using read codes).
• Patients with a record of cervical cytology exception reporting codes or codes that indicate
complete removal of the cervix were not excluded (unlike in QOF).
• Odds ratios were calculated; comparing the odds of being up to date with screening for people with
SMI to those without. This was done separately for each cancer screening programme.
• Fisher’s Exact Test for Count Data was used to test the null hypothesis that the odds ratio was 1
(i.e. to test the hypothesis that the proportion of people who are up to date with their screening was
the same for people with and without SMI).
188 MHIN: Assessing cancer screening inequality experienced by people with SMI

189. Initial results
• Within our sample, eligible people with SMI were 60% as likely as people without SMI to be up to date with
their bowel cancer screening.
• They were 80% as likely to be up to date with their breast and cervical cancer screening.
• The test’s p-values are all far below 0.05 and 0.01 – meaning we can confidently reject the claim that there is
no difference in screening coverage between the two groups.
189 MHIN: Assessing cancer screening inequality experienced by people with SMI
National Bowel Cancer Screening
Programme (FOB home test)
National Breast Cancer Screening
Programme
National Cervical Cancer Screening
Programme
SMI Non-SMI SMI Non-SMI SMI Non-SMI
Cohort size (of patients eligible
for screening)
2,372 14,232 2,448 14,688 3,836 23,016
# of patients with a record of
screening within the relevant
time period
936 7,479 1,294 8,612 2,443 15,764
Odds ratio (confidence interval in
brackets)
0.59 (0.54-0.64) 0.79 (0.73-0.86) 0.82 (0.76-0.88)
Fisher's exact test P-value 2.20E-16 9.80E-08 8.20E-08

190. Caveats
• To our knowledge, the study could offer the best available estimates of the coverage of our three
national cancer screening programmes broken down by SMI status.
But:
• If a patient moves between practices, we cannot follow them. I.e. if a 30 year old woman registered
with their GP two years ago, but was screened for cervical cancer four years ago through a
separate GP, we may inaccurately classify this person as not up to date with their screening.
• THIN is a thinning data set. This sample is from 108 practices across England, which are not
regionally representative.
• These estimates represent a snapshot in time. Coverage proportions may be changing over time.
190 MHIN: Assessing cancer screening inequality experienced by people with SMI

191. Alternative measure
• We have calculated a ‘prevalence’ measure:
• Proportion of people who are ‘up-to-date’ with their screening on a particular date.
• Pro: in line with national programme monitoring
• Con: technical issues (can’t follow people between GPs, so can’t be sure someone who
switched GPs 2 years ago hasn’t been screened in the last 3 years).
• An alternative would be to calculate an ‘incidence’ measure:
• Rate of screenings per 100 person years.
• Pro: easier to track trends over time. No need to look at an individual’s history.
• Con: Hard to compare with programme implementation and monitoring infrastructure.
191 MHIN: Assessing cancer screening inequality experienced by people with SMI

192. Alternative measure
• Example of incidence measure:
192 MHIN: Assessing cancer screening inequality experienced by people with SMI
• Access to Cancer Screening in People with
Learning Disabilities in the UK: Cohort Study
in the Health Improvement Network, a
Primary Care Research Database
• David P. J. Osborn, Laura Horsfall, Angela
Hassiotis, Irene Petersen, Kate Walters,
Irwin Nazareth
• Article:
https://doi.org/10.1371/journal.pone.0043841
• Figure:
https://doi.org/10.1371/journal.pone.0043841
.g002

193. Forthcoming publication
• Briefing series – 3 short reports for each cancer screening programme and 1 technical
guidance report
193 Assessing cancer screening inequality experienced by people with SMI
Short reports
o Background and current evidence
o Method overview
o Findings at England level only: SMI vs non-SMI, and
where possible inequalities by age, sex (bowel cancer
only) and deprivation
o Link to useful guidance, resources and best
practice examples
o Recommendations for future work
Technical guidance report
o Detail on SMI and non SMI cohort identification
o Detail on how cancer screening record was
identified in primary care data
o A full list of Read of codes used in the analysis
o Detail on the statistical analysis applied
o Comprehensive tables of results from the statistical
analysis
o A basis for a similar sub-national analysis for local
areas where access to general practice data is
available

194. Next steps
• Future work could use the Clinical Practice Research Datalink data set (with around 800 practices)
rather than THIN.
• We could replicate this analysis for the remainder of England’s national screening programmes.
• Qualitative work to understand why coverage is lower among people with SMI, alongside
identification of best practice for increasing coverage among this group.
• Inequalities in cancer case fatality may also be driven by differences in cancer care pathways post
screening and diagnosis – such as treatment plans, breaks in treatment and quality of care.
194 MHIN: Assessing cancer screening inequality experienced by people with SMI

195. Methods, initial results and next steps
Discussion 2
• How would you interpret these results?
• Do they show something you recognise?
• Who are they useful for?
• What can be done with them?
• How would you measure inequalities in access to cancer screening for people with SMI or other
sub-groups of population?
• Is there local data to support this?
• Which measures are important to assess inequality?
• Do you have local case studies you could share with us?
195 MHIN: Assessing cancer screening inequality experienced by people with SMI

196. Our products
Fingertip Profiles https://fingertips.phe.org.uk/profile-group/mental-health
Mental health data and analysis: a guide for health
professionals https://www.gov.uk/guidance/mental-health-data-and-
analysis-a-guide-for-health-professionals
Contact us: mhdnin@phe.gov.uk
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197. Events team plan