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What data are available, and how are they accessed?
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2 Health & Social Care Information Centre HSCIC Office for National Statistics ONS UK and Ireland Cancer Registries UKIACR National Audits PHE including Health Intelligence Networks Dr Foster and other intermediaries Cancer Research UK Macmillan Cancer Support Incisive Health NHS England Business Intelligence Teams Providers of information
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Where are we now? 3 What data are available, and how are they accessed? Multiple organisations moved to PHE Multiple tools and products Meet digital requirements and Knowledge and Information Strategy by: Reducing duplication of processes Reducing the number of digital tools Meet open data transparency commitments Help users find data they need
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Cancer data tools 4 What data are available, and how are they accessed? Shape (Strategic Health Asset Planning and Evaluation) SPOT (Spend & Outcome tool) GIS (Geographic information system) E Atlas CCT & Local Cancer Intelligence CHI (Clinical Headline Indicators) Cascade ( Cancer Analysis System) Fingertips ( PHOF/ Tobacco profiles ) CAS COSD Audit CWT DIDs HES RTDS SACT Cancer Statistics Intelligence Tools Strategic Tools Mapping Tools
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5 What data are available, and how are they accessed? Intelligence PHE data and knowledge gateway http://datagateway.phe.org.uk/
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6 What data are available, and how are they accessed? Intelligence Public Health Outcomes Framework NEW: compare indicators http://phoutcomes.info/
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7 What data are available, and how are they accessed? Intelligence Local Tobacco Control Profiles http://tobaccoprofiles.info/
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8 What data are available, and how are they accessed? Intelligence Public Health Profiles (Fingertips) http://fingertips.phe.org.uk/ Type in ‘cancer’ in the search box
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9 What data are available, and how are they accessed? Intelligence Longer Lives http://healthierlives.phe.org.uk/topic/mortality
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10 What data are available, and how are they accessed? Intelligence SHAPE http://shape.dh.gov.uk/index.asp Has indicators on lung cancer, sarcoma and chemotherapy Has indicators on lung cancer, sarcoma and chemotherapy
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11 What data are available, and how are they accessed? Intelligence Cancer Commissioning Toolkit (CCT) https://www.cancertoolkit.co.uk/ ‘Supporting World Class Commissioning of Cancer services across the NHS’ Types of Data available by charts: Incidence; Emergency Presentations; Mortality; Place of Death; Survival; Smoking Cessation; Peer Review; Screening; Staging, Referrals; Waiting Times; Radiotherapy; National Audit; Expenditure. Profiles : Service profiles; CCG & GP profiles. Extracts & Reports : Cancer Prevalence; Enhanced Recovery; horizon Scanning; HES; LAPCO; Routes to Diagnosis;; Cancer Nurse Specialist; Chemotherapy Nursing Workforce; Peer Review reports; Dashboards.
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12 What data are available, and how are they accessed? Intelligence Local Cancer Intelligence http://lci.cancertoolkit.co.uk/
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13 What data are available, and how are they accessed? Intelligence Cancer Stats: CASCADE https://nww.cancerstats.nhs.uk/users/sign_in
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14 What data are available, and how are they accessed? Intelligence Cancer Stats: CHI https://nww.cancerstats.nhs.uk/users/sign_in
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15 What data are available, and how are they accessed? Intelligence NCIN http://www.ncin.org.uk/home Download the ‘What cancer stats are available?’ guide
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16 What data are available, and how are they accessed? Intelligence Bespoke analyses Cancer of Unknown Primary Rare and less common cancers
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17 What data are available, and how are they accessed? Intelligence Bespoke analyses Survival by stage Outpatient analysis
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18 What data are available, and how are they accessed? Intelligence Bespoke analyses Routes to diagnosis
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19 What data are available, and how are they accessed? Intelligence Bespoke analyses Inequalities: deprivation ethnicity
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20 What data are available, and how are they accessed? Intelligence Bespoke analyses Tumour specific: breast cancer lung cancer
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21 What data are available, and how are they accessed? Intelligence PHE Office for Data Release Required documents Protocol Data specification REC approval (for research only) Legal gateway to process the data IG toolkit level 2 compliance or equivalent Required documents Protocol Data specification REC approval (for research only) Legal gateway to process the data IG toolkit level 2 compliance or equivalent The PHE Office for Data Release (ODR) ensures that requests for potentially or explicitly identifiable data are managed in line with PHE’s statutory responsibilities as a data controller, so that: Any data sharing complies with the rights of the data subject, Data Protection Act and Caldicott principles; There is an appropriate legal gateway for the receiving organisation to receive and process patient or personal data; The physical transfer of the data is secure; and, The receiving organisation can satisfy that they have in place comparable controls to ensure that the data is held securely. Data Re-use Agreement A Data Re-use Agreement (DRA) must be signed between PHE and the applicant prior to the release of the data. The DRA binds the application to specific terms of the release of the data, including agreeing to not to disclose, use or reuse the data outside the conditions of the approved release (the study protocol and associated ethics, legal permissions). Data Re-use Agreement A Data Re-use Agreement (DRA) must be signed between PHE and the applicant prior to the release of the data. The DRA binds the application to specific terms of the release of the data, including agreeing to not to disclose, use or reuse the data outside the conditions of the approved release (the study protocol and associated ethics, legal permissions). Data available through the ODR: NCRS cancer registration data National Cervical Cancer Screening National Breast Screening Programme National Bowel Cancer Screening Programme National Drug Treatment Monitoring Dataset Congenital Anomalies Register Data available through the ODR: NCRS cancer registration data National Cervical Cancer Screening National Breast Screening Programme National Bowel Cancer Screening Programme National Drug Treatment Monitoring Dataset Congenital Anomalies Register Data Release Register PHE is committed to sharing all instances in which potentially or explicitly data is released, through the publication of a PHE Data Release Register. The first register to be published in 2015. Data Release Register PHE is committed to sharing all instances in which potentially or explicitly data is released, through the publication of a PHE Data Release Register. The first register to be published in 2015. Publication of release Data release Data re-use agreement Review of application and approvals Submission to the ODR (ODR@phe.gov.uk) On average 6 weeks to release
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22 What data are available, and how are they accessed? Intelligence Understanding Cancer e-learning http://www.mylearningspace.me.uk/moodle/
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Cancer data URL 23 What data are available, and how are they accessed? Intelligence CCT Cancer Commissioning Toolkit https://www.cancertoolkit.co.uk/ NCRS Cancer Stats https://nww.cancerstats.encore.nhs.uk/users/sign_in NCIN National Cancer Intelligence Network website http://www.ncin.org.uk/home Understanding Cancer e-learning http://www.mylearningspace.me.uk/moodle/
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24 What data are available, and how are they accessed? Intelligence Other data URLs Namewebsite Public Health Profiles http://fingertips.phe.org.uk/ Public Health Outcomes Framework http://www.phoutcomes.info/ Local Tobacco Control Profiles http://www.tobaccoprofiles.info/ Longer Lives http://healthierlives.phe.org.uk/topic/m ortality Strategic Health Asset Planning and Evaluation (SHAPE) Specialised Commissioning Intelligence Dataset (indicators) for lung cancer, sarcoma and chemotherapy http://shape.dh.gov.uk/index.asp PHE Data and Knowledge Gatewayhttp://datagateway.phe.org.uk /
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25 What data are available, and how are they accessed? Intelligence Contact us enquiries@ncin.org.uk ncinanalysts@phe.gov.uk
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26 What data are available, and how are they accessed? Intelligence Contact us 2015 cancer outcomes conference
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