The challenges and opportuni6es in healthcare data
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1 NIHR Biomedical Research Centre and Demen6a Unit at South London and Maudsley NHS Founda6on Trust and King s College London The challenges and opportuni6es in healthcare data Rob Stewart Lead, Clinical and Popula;on Informa;cs SLAM Biomedical Research Centre for Mental Health Professor of Psychiatric Epidemiology and Clinical Informa;cs King s College London Academic Lead, Mental Health of Older Adults and Demen;a Clinical Academic Group
2 The trade- off Depth Size Research data Administra6ve data
3 Electronic health records
4 NIHR Biomedical Research Centre and Demen6a Unit at South London and Maudsley NHS Founda6on Trust and King s College London King s College London (KCL) SLAM Biomedical Research Centre (BRC) Case Register. Southwark Lambeth South London and Maudsley (SLAM) Lewisham Croydon
5 CRIS Security Model service user led governance CRIS users Require a trust contract or research passport Source EHR Project applica6on Audit log of all CRIS use CRIS De- iden6fica6on, including free text Trust firewall Project approval process Record level Output CRIS security model developed and managed by stakeholder / pa6ent- led oversight commiwee Findings
6 CRIS core func6onality CRIS front end EHR Data Source De- iden;fica;on Processing pipeline >280,000 cases 35,000 ac6ve cases 125 tables 6500 fields CRIS SQL
7 NIHR Biomedical Research Centre and Demen6a Unit at South London and Maudsley NHS Founda6on Trust and King s College London Risk of NMS (OR, 95% CI) 10 Data linkages 1 CRIS front end EHR Data Source Clinical Data Linkage Service CRIS SQL Mortality Cancer registra6on Hospitalisa6on Life expectancy by mental disorder Male Female
8 Data linkages EHR Data Source Clinical Data Linkage Service CRIS front end CRIS SQL Mortality Cancer registra6on Hospitalisa6on Internal linkages Pharmacy data Research databases (e.g. GAP) Biobank and omics data Psychological therapies (IAPT) Clozapine monitoring King s Health Partners BadgerNet (neonatology) Maternal and child health External linkages Primary Care Na;onal Pupil Database Me and My School? London Ambulance Service? Benefits (DWP)? Forensic (MoJ)? Na;onal Cancer Registry (refresh)? Myocardial Infarc;on Na;onal Audit Programme? Individual census records Context Local environment (SELCoH) Social media (PHEME)? Geospa;al data? Temperature/weather
9 CRIS and the pa6ent journey Interven6on indica6ons Interven6on context Interven6on Outcome Demographics Diagnosis HoNOS Linked data Service contact Admission/discharge?Prescribing Service contact Admission/discharge Length of stay?prescribing Linked data HoNOS (paired)
10 NIHR Biomedical Research Centre and Demen6a Unit at South London and Maudsley NHS Founda6on Trust and King s College London CRIS informa6on expansion 2 CRIS front end EHR Data Source Clinical Data Linkage Service CRIS SQL External data Natural language processing ( text mining )
11 CRIS with NLP (CRIS- CODE) Interven6on indica6ons Interven6on context Interven6on Outcome Symptoms Psychosis Posi;ve þ Nega;ve þ Disorganisa;on þ Manic þ Catatonic þ Affec;ve Mood þ Biological symptoms þ Instability þ Anxiety Obsessive/compulsive þ Soma;c Behaviour Agita;on/withdrawal þ Other Insight þ Context Cogni;ve func;on þ Social care þ Living alone þ Diagnosis þ Social status? Timelines Educa;on? Physical disorders? Interven;ons Inves;ga;ons? Symptom paderns Family? Suppor;ve/behavioural Substances Onset Smoking þ Past events Alcohol? Language Cannabis þ Mephedrone þ Forms Amphetamine þ Cocaine þ Others? Interven6ons Pharmacotherapy þ Polypharmacy þ Adherence/compliance þ Future challenges / opportuni6es Text fields / zones Psychotherapy CBT þ (receipt, offer, etc.) DBT? CAT Real- ;me processing Correc;on and learning Export poten;al Outcomes Adverse drug events Extrapyramidal þ Other? Symptom trajectories? Improvement Deteriora;on General mental health? Improvement Deteriora;on þ = complete? = in progress
12 Integrated informa6cs Devices MyHealthLocker Pa;ent- reported outcomes EHR Raw data Derived data Decision support CRIS Context Geospa;al data Social media Temporal trends External data Data linkage facility Recruitment (C4C, CRIS- REP) FIREWALL Bioresource 8000 samples 3500 pa;ents in
13 Dementia course the role of new data Diagnosis? Death Demen6a care Acute care Primary Care Incen6ves? Other data? Devices? Carer report?
14 Predic6on work suicide / self- harm Rina Duda Health Founda;on Fellowship
15 NIHR Biomedical Research Centre and Demen6a Unit at South London and Maudsley NHS Founda6on Trust and King s College London Feedback mental health media- watch hdp:// popula;on- and- informa;cs/pheme/
16 Feedback social media monitoring? Level of admissions? Crisis episodes? Self- harm? (contemporaneous / with lag ;me)?
17 Big data and clinical interven6on? Observa6onal research (Volume) (Velocity) (Variability) Variety Veracity Health record interven6ons Volume Velocity Variability (Variety) Veracity EHR CRIS EHR CRIS
18 The SLAM- KCL Centre for Transla6onal Informa6cs Leads Richard Dobson, Stephen Docherty, Rob Stewart Administra6on / management Madhew Broadbent, Debbie Cummings, Lucy O Neill, Megan Pritchard Epidemiology / Clinical Chin- Kuo Chang, Craig Colling, Rina Duda, Johnny Downs, Richard Hayes, Anna Kolliakou, Rashmi Patel, Gayan Perera, Kate Polling, Alex Tulloch, Katherine Sleeman, Christoph Mueller Bioinforma6cs / Computer Science / NLP David Chandran, Amos Folarin, George Gko;s, Karen Hodgson, Zina Ibrahim, Steve Kiddle, Yevgeniya Kovalchuk, Stephen Newhouse, Jenniifer Mollon, Alessandro Pandini, Petra Proitsi, Mar;na Sadlecker PhD studentships Elizabeth Baker, Michael Ball, Karolina Bogdanowicz, Andrea Fernandes, Rebecca Harrison, Ehtesham Iqbal, Richard Jackson, Nishamali Jaya;lleke, Giouliana Kadra, Max Kerz, Leo Koeser, Daniel Leirer, Hamel Patel, Russel Sutherland, Clare Taylor, Nicola Voyle, Usha Gungabissoon Technical team Amelia Jewel (data linkage), Hitesh Shedy (data extrac;on), Jyo; (NLP support) Oversight and Governance Felicity Callard, Jenny Liebscher, Sean Maskey, Katharine Rimes, Murat Soncul, Patrick Green SLAM partners Michael Holland, Kumar Jacob, Anthony Schnarr, John Turp, Alistair MacDonald University of Sheffield collaborators Angus Roberts, Genevieve Gorrell, Ian Roberts
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