Informatics: Opportunities & Applications. Professor Colin McCowan Robertson Centre for Biostatistics and Glasgow Clinical Trials Unit

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1 Informatics: Opportunities & Applications Professor Colin McCowan Robertson Centre for Biostatistics and Glasgow Clinical Trials Unit

2 Routine Data "routine data" is data collected as byproducts of clinical care by the clinician and as an integral part of the process of care. Williams JG, BMJ 1995;310; Secondary data : collected by someone else then used by researcher

3 From birth to death

4 Why use routine data? Already collected in many different healthcare and administrative settings Collection process not intrusive to target population Retrospective data available which is regularly updated Studies can be done now Costs of using data lower than for prospective collection Potential for datasets to be linked giving rich source of information about large numbers of patients with different conditions across diverse geographical and healthcare settings Collected in a consistent way Ethical and consent issues can be less problematic

5 Epidemiology Identify patients with specific disease or taking a specific treatment Use hospitalisations and death data to build-up clinical histories and investigate outcomes Support clinical trials Support feasibility studies and patient recruitment Passive follow-up of subjects : cheaper, maximises follow-up Support other research methods Cross-sectoral linkage Act as sampling frame for qualitative studies Research Using Routinely Collected Data

6 Women with breast cancer using endocrine therapy were missing tablets Study: Linking prescribing records to hospital discharge, cancer registry, cancer clinic data and mortality records Results: Low adherence was associated with poorer survival (HR=1.20; 95% CI= , P=0.019) Adherence to medication in women with breast cancer

7 WOSCOPS follow-up % Landmark trial of statin use in patients with no previous CHD Study: Use record linkage of trial data to hospital discharge, cancer registry, and mortality records Results: Placebo Pravastatin Years since randomisation CHD death or CHD event

8 Cancer Screening in Women in Glasgow Lower uptake of bowel screening in women than for breast or cervical screening Study: Link screening records and examine difference in characteristics for uptake. Invite women for interview to explain why they use other cancer screening services but not bowel National Awareness and Early Diagnosis Initiative (NAEDI)

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11 Scottish Health Informatics Programme

12 Creating safe settings and data security SHIP Blueprint highlights: Safe Projects Safe People Safe Data Safe Settings Safe Outputs

13 Safe Settings Thomas and Walport Data Sharing Review (2008): environments for population based research and statistical analysis in which the risk of identifying individuals is minimised

14 Safe Settings

15 Scottish Developments Farr Institute links centres from London, Manchester, Scotland and Swansea Scotland has 6 Universities plus NSS in partnership Core components Physical centres Safe havens e-infrastructure New data access Communication

16 Electronic Data Research and Innovation Service (edris) Glasgow Safe Haven Lothian Safe Haven

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18 Predicting methotrexate response and toxicity using an integrated polyomic approach (PROMISE-RA) Study: Link clinical data from prescribing records and outpatient visits (SERA) to genetic data from sequenced samples Stratified Medicine Scotland - Innovation Centre

19 NHS Scotland funded programme to harness existing health data to support clinicians in improving patient outcomes and reduce harm from community and healthcare acquired infection Infection Intelligence platform Study: Link national Datasets pertinent to the comprehensive analysis of patterns in infection treatment, prevention, surveillance and clinical outcome

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