1. SNOMED-CT: Better data Better Outcomes Professor John Williams Director, Health Informatics Unit, RCP 15 April 2016

2. Overview Why we need change The benefits of recording data under structured headings using SNOMED- CT What data do we need in this form?

3. Five key challenges Increasing clinical demand Changing patients, changing needs Fractured care Out-of-hours care breakdown Looming medical workforce crisis

4. Patients and compassion People Place and process Planning and infrastructure Paper and data Reported in September 2013 https://www.rcplondon.ac.uk/sites /default/files/future-hospital- commission-report_0.pdf

5. Informatics in the Future Hospital Appropriately informed patients and staff Seamless care, integrated across all boundaries Shared clinical decisions informed by reliable individual and aggregated data Treatment targeted with individual precision Services informed by appropriate use of ‘big data’ A learning organisation that uses transparent safety data Safe and effective use of new technologies, including own devices (patient & professional) An appropriately trained workforce Valid data to support service performance, improvement & development, audit and research

6. Myocardial infarction events Four sources: primary care; secondary care; disease registry; death certificates Each data source missed 25–50% of myocardial infarction events Herrett E, et al. BMJ 2013;346:f2350

7. Health Records should: Be electronic, integrated, with a focus on the patient Be available whenever and wherever needed Be structured but include free text Conform to national standards for structure & content Contain coded clinical terms, with agreed definitions Capture data that feeds many purposes http://www.aomrc.org.uk/index.php/publications/reports-a-guidance

8. Standards for electronic records Technical – operating systems, networking, application interfaces Information – terminology (SNOMED-CT), drugs (dm+d), communication (HL7), patient identification (NHS number) Professional – structure and content

9. Structure & Content Standards Generic record keeping Admission, handover & discharge Pre-hospital care Referrals Core content Crisis care Medication communications Clinical incidents Endoscopy Patient view

10. With standards we can tailor the patient’s view by linking personalised information to coded data:

11. Stratified Medicine Requires identification of groups of people most likely to respond to specific treatments, based on their genetic makeup, clinical features, test results, lifestyle and environment. i.e; both their genotype, and their clinical, lifestyle and environmental phenotype

12. Phenotypic data is too limited…. For example: Inflammatory Bowel Disease Crohn’s, Ulcerative Colitis or Indeterminate? Gender; Age of onset Anatomical distribution Severity Behaviour – inflammation/fistulisation/stenosis Lifestyle (smoking; diet) Family history Biomarkers – blood & imaging results Treatment Response to reatment

13. Commissioning Audit Research Stratified medicine Patient care Data requirements All can be met from data recorded once at the point of care

14. ‘Point of care’ data for pragmatic trials Is an achievable goal (Williams et al HTA 2003) But systems are not fit for purpose Will enable larger, cheaper trials (Cohen et al Health Economics 2003) Clinical data could be used as proxy for HRQoL items (Hutchings et al International Journal of Technology Assessment in Health Care 2005) But clinical data are not rich or accurate enough to do this routinely Can enable large pragmatic trials in primary care (van Staar et al HTA 2013) But limited by research governance and data provenance

15. What are the threats? Information governance Inertia regarding change What’s are the opportunities Natural language processing Improved provenance of structured data Widening data capture from devices and handhelds

16. Natural Language Processing Big opportunity for the future Will not replace structured coded data Particularly useful for large volumes of free text Will not find data that is not recorded in the first place

18. Is this pie in the sky? PRSB has been established Standardisation of records is in policy from DH, NHS England, HSCIC, and the NHS Contract It has been spelt out by the AoMRC Leadership, procurement, education and training will drive implementation With the escalating costs of audit, registries and randomised trials, and the arrival of stratified precision medicine, can we afford not to tackle this?

20. Three year prognosis following admission for ulcerative colitis in England, 1998/99– 2002/03 HES/ONS Hospital admission for ulcerative colitis and Crohn’s disease in England: comparison of mortality with and without colectomy. BMJ 2007;335:1033-36.

21. Large volumes of routine data are available for linkage with data from other sources Widely used for observational studies Also to identify potential participants for trials

22. Current Datasets in SAIL (red = incomplete coverage) Administrative Health: Population Inpatients Outpatients Emergency Department Child Health Database Wales Administrative Non-Health: Births Deaths Educational Attainment Social Services Housing Clinically rich data bases: Specialty specific Cancer Incidence Cancer Screening Congenital Anomalies Arthropathies Myocardial Infarction Diabetes General GP Data Laboratory systems Study specific Embedded trials and cohorts www.saildatabank.com Data linked using ALFs (Anonymised Linking Fields) Pseudo-anonymised Rigidly controlled access Unstandardised clinical content Data linked using ALFs (Anonymised Linking Fields) Pseudo-anonymised Rigidly controlled access Unstandardised clinical content

23. Links health and education data via ALF_E Links maternal health data via ALF_E/MALF_E Links SAIL eGIS data via ALF_E/RALF_E WECC core n = 981,404 ♂ : 500,181 (51.0%) ♀ : 481,205 (49.0%) WECC core n = 981,404 ♂ : 500,181 (51.0%) ♀ : 481,205 (49.0%) Inpatient GP consultations Perinatal and Child health Environment House Moves Non-Welsh births n=215,095 ♂ : 107,222 (49.8%) ♀ : 107,872 (50.2%) Non-Welsh births n=215,095 ♂ : 107,222 (49.8%) ♀ : 107,872 (50.2%) Born in Wales n= 766,309 ♂ : 392,959 (51.3%) ♀ : 373,333 (49.0%) Born in Wales n= 766,309 ♂ : 392,959 (51.3%) ♀ : 373,333 (49.0%) WECC derived tables National dataset Education

24. What needs to be done? Agree those headings that should always be completed Work with professional bodies to define common terms Promote change in culture – understanding of the wider benefits of accurate record keeping Harness drivers for change Education & training at all levels Radical change in the process for returns

25. Multicentre, pragmatic, mixed methods RCT Compared the clinical effectiveness and cost effectiveness of infliximab and ciclosporin in steroid resistant acute severe colitis 64 hospitals; data on 1600 admitted with acute severe colitis; 270 RCT participants recruited from this cohort Primary outcome HRQoL over 1 to 3 years Secondary outcomes: colectomy; LOS; readmissions; adverse events; mortality; NHS and patient borne costs Now following patients for ten years using linked routine data BMJ Open 2014;4:e005091 doi:10.1136/bmjopen-2014-005091