World Leading Expertise in Use of Medical Records Frank Sullivan FRSE, FRCP, FRCGP, CCFP General Medical Practitioner, North Glen Practice, Glenrothes Professor of Primary Care Medicine, University of St Andrews Medical School Clinical lead for East node of NRS Primary Care Gordon F Cheesbrough Chair North York General Hospital and Department of Family & Community Medicine Toronto Adjunct Scientist Institute of Clinical Evaluative Sciences Ontario Hon. Prof University of Dundee 1
How would we know if we have World Leading Expertise? GoDARTS Study: linked data allows genomics of the ephenome > 50 publications in Nature Genetics, Nature, Science and NEJM since 2006. 2
NIHR-Institute for Global Diabetes Outcomes Research 7M GoDARTS 250,000 T2D Patients Full Clinical History 25,000 patients GWAS Vampire retinal assessments Mohan s DiabetomeDb 400,000 T2D Patients Full Clinical history 25,000 patients GWAS Mobile Retinogram programme Mobile telehealth 6/2/2015 3
Memorandum of Understanding (MOU) Data Sharing Agreement (DSAs) REB Approvals UTOPIAN (Ontario) CPCSSN infrastructure Additional CPCSSN Networks (future) $35M Network Directors RRSPUM (Quebec) DAC Repository Data Presentation Tool Estimates (ND) Installation (Matt) NAPCReN (Alberta) $50,000 budgeted Diabetes Complication Prediction Dataset Curated by new Data Manager SAPCReN (Alberta) Provision of a server - filtered for patients with DM Virtual Research Environments (VREs) New DM to Manage Updated Definition of Diabetes (A1c >6.5%)
The next 25 minutes Track Record CHI number DARTS to SCI-Diabetes Current expertise Observational - Farr Interventional ECLS & SHARE Maintaining a world leading position HDRUK@Scotland Scottish Learning Health System 5
Medical records create Registers
Laboratory Results Community Health Index Audit and Reporting Primary Care Systems Secondary Care Systems Patient Reported Measures Diabetic Retinopathy Screening Scottish Diabetes Research Network
Keeping the register updated Scotland s diabetes prevalence 2002: 103,835 (2%) 2016: 291,981 (5.4%) Type 1: 10.8%; Type 2: 88.3%; Other types: 0.9%
Amputation rates in Tayside per 1000 patients with diabetes. adjusted for age and sex. Total Major Diabetic Medicine Volume 26, Issue 8, pages 773-777, 30 MAY 2009 DOI: 10.1111/j.1464-5491.2009.02770.x http://onlinelibrary.wiley.com/doi/10.1111/j.1464-5491.2009.02770.x/full#f1
Vasculature Assessment and Measurement Platform for Images of the REtina semiautomatic software developed by Universities of Dundee and Edinburgh 10
Research Data Management Platform 11
Proportionate governance STAGE 1 STAGE 2 STAGE 3 BENCHMARKS (PUBLIC INTEREST, SAFE PEOPLE, SAFE SYSTEMS, SAFE ENVIRONMENT, RELATIVE RISKS) PRIVACY RISK ASSESSMENT (BASED ON CRITERIA SUCH AS DISCLOSIVENESS, SENSITIVITY ETC) CATEGORY 0 PUBLIC DOMAIN - NO FURTHER CONDITIONS CATEGORY 1= LOW IMPACT NO FURTHER REVIEW - STANDARD TERMS AND CONDITIONS CATEGORY 2= MEDIUM IMPACT FAST TRACK REVIEW + STANDARD TERMS AND CONDITIONS = POSSIBLE FURTHER CONDITIONS CATEGORY 3= HIGH IMPACT FULL REVIEW + STANDARD TERMS AND CONDITIONS = POSSIBLE FURTHER CONDITIONS
Safe Haven access to data 13
Jensen PB, Jensen LJ, Brunak S. Mining electronic health records: towards better research applications and clinical care. Nat Rev Genet. 2012 2;13(6):395-405.
Figure 4 Selected comorbidities in people with four common, important disorders in the most affluent and most deprived deciles COPD=chronic obstructive pulmonary disease. TIA=transient ischaemic attack. Karen Barnett, Stewart W Mercer, Michael Norbury, Graham Watt, Sally Wyke, Bruce Guthrie Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study The Lancet, Volume 380, Issue 9836, 2012, 37-43 http://dx.doi.org/10.1016/s0140-6736(12)60240-2
Participants People at High (2% over 2 yrs) risk of developing lung Ca 50-75, Most deprived quintile, 20+ pack yrs, Family History Intervention 7 Antigen Early-CDT lung test If +ve CXR, CT scan, baseline then 6 monthly for 24 months Comparison Standard clinical care Outcome Difference at 24M, between the number of patients with stage 3, 4 or unclassified lung cancer at diagnosis 85% power at 5% significance (two-sided) to detect an estimated reduction of 35% in late stage presentation rate 17
Identifying patients at practice level n=5 437 640 960 3 837
ECLS Study Subjects 77 066 patients contacted(47 262 reminders) 166 practices from most deprived quintile (200/1000) Tayside, Greater Glasgow & Clyde Lanarkshire 16% of those approached were recruited
What is SHARE? A register of people aged 16 or over and living in Scotland who have said they are interested in helping with medical research. With permission to link to their NHS Datasets to establish their eligibility for research projects. Builds upon Scotland s excellent informatics Databases Record Linkage
21
Recruit by genotype 0 risk alleles and 2 risk alleles Recruit by Genotype clinical trials Randomised, placebo-controlled matched cross-over design. Laura McCreight
A world leading interdisciplinary research institute that will be independent, open and inclusive, capitalising on the UK s unique research strengths and data assets. The Institute will be established as an independent legal entity and be able to operate and invest in research, skills, and underpinning capability across the UK. 24
HDRUK@Scotland 25
Scotland has World Leading Expertise in Use of Medical Records Let s make full use of our strengths for the benefit of our patients and internationally. 27