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PHE screening inequalities conference final slides

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PHE screening inequalities conference final slides

  1. 1. Events team plan
  2. 2. Welcome address Professor Anne Mackie, Director of Screening, Public Health England
  3. 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. 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. 5. PHE Screening inequalities strategy 5 PHE Screening Inequalities Conference - Welcome address Published May 2018. User feedback May 2019.
  6. 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. 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. 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. 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. 10. Cervical coverage by CCG vs deprivation PHE Screening Inequalities Conference - Welcome address10 PHE Screening Inequalities Conference – Welcome address
  11. 11. Breast cancer screening: age and learning disability 11 PHE Screening Inequalities Conference - Welcome address
  12. 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. 13. What have we achieved? 13 PHE Screening Inequalities Conference - Welcome address Positive force for change Raised profile of inequalities Encouraged sharing
  14. 14. What more can we do? 14 PHE Screening Inequalities Conference - Welcome address tools & resources shared forum collaboration dissemination data analysis
  15. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 30. Accessing data – an IG primer for inequalities work Dr J Kevin Dunbar, Regional Head of Quality Assurance, Public Health England
  31. 31. Information Governance is Important 31
  32. 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. 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. 34. Not a lawyer Inequalities and data 34
  35. 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. 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. 37. Special Categories Protected Characteristics 37
  38. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 48. Screening data supporting the inequalities work Radoslav Latinović, National Screening Data and Information Lead, Public Health England
  49. 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. 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. 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. 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. 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. 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. 55. Application process flowchart 55 PHE Screening - Screening data supporting inequalities work
  56. 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. 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. 58. Data lake? 58 PHE Screening - Screening data supporting inequalities work
  59. 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. 60. Screening equalities in a digital world Nick Johnstone-Waddell and Rich Denyer-Bewick
  61. 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. 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. 63 Screening equalities in a digital world
  64. 64. User research 64 Screening equalities in a digital world Surveys In depth phone interviews Focus groups 1:1 discussions
  65. 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. 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. 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. 68. PHE Screening blog 68 Screening equalities in a digital world phescreening.blog.gov.uk to subscribe
  69. 69. Digital Inclusion since 2000 - Independent, charitable organisation - Diverse communities around UK -
  70. 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. 71. Digital Exclusion - Profile Older Disabled Low Income
  72. 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. 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. 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. 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. 76. Switch Digital Exclusion & Diabetes
  77. 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. 78. 1. Connect to internet 2. Go to: menti.com 3. Enter code: 32 91 24
  79. 79. 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
  80. 80. 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
  81. 81. NHS England and NHS Improvement
  82. 82. NHS England and NHS Improvement
  83. 83. NHS England and NHS Improvement
  84. 84. NHS England and NHS Improvement
  85. 85. NHS England and NHS Improvement
  86. 86. NHS England and NHS Improvement
  87. 87. NHS England and NHS Improvement
  88. 88. NHS England and NHS Improvement
  89. 89. NHS England and NHS Improvement
  90. 90. 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
  91. 91. 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)
  92. 92. test
  93. 93. test
  94. 94. test
  95. 95. test
  96. 96. test
  97. 97. test
  98. 98. test
  99. 99. test
  100. 100. 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
  101. 101. Events team plan Workshop A: Improving access to screening for members of the LGBT community Harri Weeks, Stakeholder Engagement Manager, National LGB&T Partnership
  102. 102. PHE Screening Inequalities Conference 11th November 2019 Improving access to screening for members of LGBT+ communities
  103. 103. 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
  104. 104. 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.
  105. 105. 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
  106. 106. 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.
  107. 107. 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
  108. 108. 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.
  109. 109. 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.
  110. 110. 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
  111. 111. Cervical Screening
  112. 112. 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
  113. 113. 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
  114. 114. 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?
  115. 115. Breast Screening
  116. 116. 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)
  117. 117. 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
  118. 118. 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.
  119. 119. 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?
  120. 120. AAA Screening
  121. 121. 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
  122. 122. 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
  123. 123. Bowel Screening
  124. 124. 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.
  125. 125. What can services do to ensure inclusivity?
  126. 126. 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.
  127. 127. 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
  128. 128. 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
  129. 129. 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
  130. 130. Any Questions?
  131. 131. 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
  132. 132. 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/
  133. 133. 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
  134. 134. “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
  135. 135. 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
  136. 136. 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/
  137. 137. 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
  138. 138. quiz ?
  139. 139. quiz What percentage of the population is estimated as having a learning disability? ◦ A. 1% ◦ B. 2% ◦ C. 5% ?
  140. 140. quiz What percentage of the population is estimated as having a learning disability? ◦ A. 1% ◦B. 2% ◦ C. 5% ?
  141. 141. 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% ?
  142. 142. 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% ?
  143. 143. quiz How many years younger does the average person with a learning disability die? ◦ a. 11 years ◦ b. 19 years ◦ c. 27 years ?
  144. 144. quiz How many years younger does the average person with a learning disability die? ◦ a. 11 years ◦ b. 19 years ◦ c. 27 years ?
  145. 145. quiz What is the average reading age of adults in the UK? a. 9 years b. 12 years c. 15 years ?
  146. 146. quiz What is the average reading age of adults in the UK? a. 9 years b. 12 years c. 15 years ?
  147. 147. Sharing learning • Share information on projects • Share learning • Share ideas • Share contacts
  148. 148. 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
  149. 149. 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?
  150. 150. 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
  151. 151. Sharing learning • Share information on projects • Share learning • Share ideas • Share contacts
  152. 152. Julie.tucker11@nhs.net T: 0113 824 9693 M: 0786 0177 981
  153. 153. 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
  154. 154. Background 158
  155. 155. 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
  156. 156. What we did – audit all maternity providers 160
  157. 157. Referral routes to antenatal care 161
  158. 158. 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
  159. 159. Fast tracking of known carriers 163
  160. 160. Gestation at first presentation 164
  161. 161. Time from referral to first appointment 165
  162. 162. Timeframe from maternal screening to father screening 166
  163. 163. Variation in father testing uptake by service provision 167
  164. 164. Gestation at offer of Pre-natal Diagnosis 168
  165. 165. Impact of gestation on acceptance of PND 169
  166. 166. Time from PND procedure to informing parents of result 170
  167. 167. Pregnancy outcomes 171
  168. 168. ST2 KPI Timeliness of test by regions 2014/15 and 2018/19 172
  169. 169. Recommendations • Maternity referral forms • Direct referral and fast tracking • Guidelines/SOP’s • SCT genetic counselling • Review screening pathway • Re - audit pathway 173
  170. 170. 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
  171. 171. 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
  172. 172. 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
  173. 173. 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
  174. 174. 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
  175. 175. 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
  176. 176. 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
  177. 177. 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
  178. 178. 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
  179. 179. 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
  180. 180. 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
  181. 181. ‘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
  182. 182. 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
  183. 183. 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
  184. 184. 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
  185. 185. 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
  186. 186. 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
  187. 187. 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
  188. 188. 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
  189. 189. 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
  190. 190. 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
  191. 191. 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
  192. 192. 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 Subscribe to our monthly bulletin which gives a snapshot of our latest resources and key messages that we wish to share.
  193. 193. Events team plan

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