London approach to LWBC metrics Stephen Scott – Head of Informatics – RM Partners

London approach to LWBC metrics Pan London approach to collection of LWBC metrics collated by informatics team within RM Partners (collected on a Pan-London basis since 2015) Quarterly returns received from trusts detailing tumour level volumes of Holistic Needs Assessment around diagnosis Holistic Needs Assessment at end of treatment End of Treatment summary Attendance at Health and Well Being Event Patient stratified into self management for breast/colorectal and prostate These are compared to numbers of 1st treatments in Cancer Waiting Times as estimate for proportion of patients receiving intervention. Overall report produced alongside one for each tumour type.

Overall – London metrics Chapter 6 – Living With and Beyond Cancer Provider Scorecard – Q3 2018/19 (October to December 2018)   6.1. Holistic Needs Assessment within 31 days of diagnosis 6.2 Holistic Needs Assessment within 6 weeks of end of treatment 6.3. Treatment summary within 6 weeks of end of treatment 6.4. Proportion of patients attending Health and Well Being Event 6.5.1 Proportion of patients stratified onto self management (risk stratified pathway) - Breast Cancer 6.5.2 Proportion of patients stratified onto self management (risk stratified pathway) - Colorectal Cancer 6.5.3 Proportion of patients stratified onto self management (risk stratified pathway) - Prostate Cancer Period Q3 2018/19 Benchmarks used Green ≥70%, Yellow 20-70%, Red <20% Green ≥40%, Yellow 10-40%, Red <10% RM Partners Chelsea and Westminster NHS Foundation Trust 76% 14% 9% 0% 55% Croydon Health Services NHS Trust 84% 18% 26% 5% 73% Epsom and St Helier University Hospitals NHS Trust 37% 16% 45% 32% Imperial College Healthcare NHS Trust 64% 23% 10% 80% Kingston Hospital NHS Foundation Trust 119% 53% 42% London North West Healthcare NHS Trust 65% 33% 17% 7% St George's University Hospital NHS Foundation Trust 56% 4% 15% 132% 40% The Hillingdon Hospitals NHS Foundation Trust 83% 139% 11% The Royal Brompton and Harefield NHS Foundation Trust 27% N/A The Royal Marsden NHS Foundation Trust 49% 43% 12% 160% RM Partners total 20% 22% 19% 70% 30% South East London Guy's and St Thomas' NHS Foundation Trust 2% King's College Hospital NHS Foundation Trust 57% 21% 47% 31% 25% Lewisham and Greenwich Healthcare NHS Trust South East London total 52% 8% 38% UCLH Cancer Collaborative Barking, Havering and Redbridge University Hospitals NHS Trust 54% Barts Health NHS Trust 36% 46% 91% 44% 267% Homerton University Hospital NHS Foundation Trust 60% 3% Moorfields Eye Hospital NHS Foundation Trust No return received North Middlesex University Hospital NHS Trust 13% 6% Royal Free London NHS Foundation Trust 1% Royal National Orthopaedic Hospital NHS Trust The Princess Alexandra Hospital NHS Trust 68% 24% Whittington Health NHS Trust 130% 435% 50% University College London Hospitals NHS Foundation Trust 34% UCLH Cancer Collaborative total 39% London Overall (including PAH) Collated by RM Partners Informatics team Contact - RMpartners.informatics@nhs.net

Proportion of patients receiving a Holistic Needs Assessment (HNA) within 31 days of diagnosis – Q3 2018/19   Tumour group London overall (including PAH) Numbers of 1st treatments in CWTs Numbers of HNAs within 31 days Estimation of % of patients with HNA within 31 days Breast 1,441 1,013 70.3% Urology 2,086 1,352 64.8% Lower GI 858 510 59.4% Gynaecology 584 337 57.7% Upper GI 630 339 53.8% Head and Neck 405 188 46.4% Haematology 724 311 43.0% Skin 1,197 489 40.9% Other (inc. unknown primary) 91 26 28.6% Lung 1,174 310 26.4% Brain/CNS 193 13.5% Sarcoma 119 15 12.6% Total 9,502 4,916 51.7%

Cancer Scorecard – April 2019 Domain Measure Benchmark Period North West London STP South West London STP RM Partners overall Change since last period Providers/sites meeting standard CCGs meeting standard England average Ranking against other Alliances Best Practice Care 1. 2 week wait: Urgent suspected cancer GP referral to 1st seen (Population) 93% Q3 2018/19 93.6% 96.7% 94.8% +0.9% 8/10 12/14 2. 2 week wait Breast symptomatic referral to 1st seen (Population) 92.3% 95.6% 93.7% +1.1% 7/8 10/14 3. 62 day: Urgent suspected cancer GP referral to 1st treatment (Population) 85% 85.9% 88.7% 87.2% +3.6% 7/10 11/14 1/19 4. 62 day: Screening referral to 1st treatment (Population) 90% 85.1% 89.0% 87.0% +1.4% 5/8 6/14 5. Bowel screening coverage (60-74 year olds) 60% June 2018 47.7% 54.4% 50.5% +0.3% 0/14 59.8% 18/19 6. Breast screening coverage (50-70 year olds) 70% 64.8% 69.0% 66.6% 5/14 71.9% 7. Cervical screening coverage (25-64 year olds) 80% 60.8% 68.5% 64.0% -0.5% 71.5% 19/19 Positive experience 8. NCPES - Q2 – How do you feel about the time you had to wait for your 1st appointment? NCPES 2017 -Admissions Q1 2017/18 80.1% 82.0% 81.4% +1.8% 4/10 84.2% 9. NCPES – Q9 – How do you feel about the way you were told you had cancer. 82.8% 82.7% +0.6% 6/10 84.7% 10. NCPES – Q59 – Overall, how would you rate your care? 8.54 8.81 8.73 +0.07 2/10 8.80 Best Clinical Outcomes 11. Proportion of cancers stage 1 or 2 (Taskforce definition) 2017 54.5% 57.1% 55.7% +1.9% 53.6% 12. Proportion of cancers stage 1 or 2 (CCG IAF definition) 51.6% 54.8% 53.1% +2.4% 52.2% 2/19 13. Proportion of patients diagnosed via an emergency (population based) July 2017 to June 2018 19.5% 15.5% 17.7% -1.8% 8/14 18.8% 14. 1 year cancer survival index England average (95% CI) 2016 74.9% 75.2% 75.0% +-0.7% 72.8% Quality of life 15. Proportion of patients receiving a Holistic Needs Assessment around diagnosis 65.2% 63.2% 64.1% 16. Proportion of patients receiving an End of Treatment Summary at end of treatment 17.1% 25.5% 21.7% +2.1% 0/10 Data quality 17. % completeness of stage at diagnosis – COSD level 2 54.7% 66.3% 60.1% -1.1% 3/10 57.4% 17. % completeness of performance status – COSD level 2 48.7% 58.4% -12.6% 48.3%

Advantages and disadvantage of approach Produces comparative metrics for LWBC interventions to be used across system, which increases profile of metrics Covering 3 Alliances, allows comparisons across different systems, particularly at tumour level Agreed definitions across London providers to provide relatively comparable figures Gives every tumour type content/metrics to discuss for LWBC Able to demonstrate improvement. Disadvantages Labour intensive approach, both locally for providers and to collate regionally Estimation of completeness, based on 1st treatments in CWT not necessarily reflective of where LWBC interventions undertaken (but have been able to identify an alternative)

London E-HNA audit 2017 overview Pan London approach to Living With and Beyond Cancer including informatics support provided via RM Partners Quarterly returns detailing counts of elements of recovery package and patients enter onto self-management pathway from trusts Analysis of Electronic Holistic Needs Assessments (E-HNA) Originally E-HNA analysis for 2016, based on a direct feed from Macmillan’s tool. Repeated in 2017 but this time Returns received directly from London providers Able to include E-HNA information from different systems (e.g Somerset) Included additional information on care plans and resulting actions from HNA

E-HNAs included across London 9,793 patient E-HNA recorded included across London

Participation by trust across London

Number E-HNAs by stage of pathway London breakdown 41% at initial cancer diagnosis 16% at start of treatment 14% during treatment 22% at end of treatment

E-HNAs with a care plan London 60% of patients with a care plan linked to their E-HNA 42% of patients received a copy of their care plan

Number of concerns by tumour types

Top concerns – Overall

Variation in top concerns by age group - London

Difference in newly diagnosed and end of treatment Concerns with the biggest increase between patients between newly diagnosed and patients at end of treatment - London Concern Newly diagnosed (2,783 E-HNAs) End of treatment (1,501 E-HNAs) Difference in newly diagnosed and end of treatment Number of e-HNAs % of patients who had E-HNA with concern Hot flushes or sweating 118 4.2% 266 17.7% 13.5% Tired, exhausted or fatigued 436 15.7% 416 27.7% 12.0% Tingling in hands or feet 101 3.6% 140 9.3% 5.7% Sleep problems 311 11.2% 248 16.5% 5.3% Memory or concentration 188 6.8% 181 12.1% Sex, intimacy or fertility 146 5.2% 156 10.4% 5.1% Diarrhoea 80 2.9% 108 7.2% 4.3% Passing urine 263 9.5% 200 13.3% 3.9% Pain or discomfort 516 18.5% 326 21.7% 3.2% Dry, itchy or sore skin 209 7.5% 157 10.5%

Difference in newly diagnosed and end of treatment Concerns with the biggest decrease between patients between newly diagnosed and patients at end of treatment - London Concern Newly diagnosed (2,783 E-HNAs) End of treatment (1,501 E-HNAs) Difference in newly diagnosed and end of treatment Number of e-HNAs % of patients who had E-HNA with concern Worry, fear or anxiety 1227 44.1% 433 28.8% -15.2% Difficulty making plans 340 12.2% 118 7.9% -4.4% Transport or parking 239 8.6% 64 4.3% -4.3% Children 330 11.9% 115 7.7% -4.2% Partner 286 10.3% 94 6.3% -4.0% Taking care of others 252 9.1% 81 5.4% -3.7% Eating, appetite or taste 380 13.7% 162 10.8% -2.9% Money or housing 306 11.0% 123 8.2% -2.8% Wound care 223 8.0% -2.6% Work or education 343 12.3% 149 9.9% -2.4%

Next steps for E-HNA analysis Scoping further analysis including Tumour specific analysis Deep dives into particular concerns Analysis of actions resulting from care plans Development of trust level reports Linkage to cancer information system at trust level Plans to repeat audit for 2018 cohort of patients Future plans to link Macmillan’s tool with Somerset allowing additional analysis Ongoing encouragement to trusts, to use a E-HNA tool.

Questions stephenscott@nhs.net