1. National Cancer Intelligence Network What data are available, and how are they accessed? Cancer Roadshow (London) 13 th April 2015 Vivian Mak, Information Team Leader, NCIN

2. Providers of information 2What data are available, and how are they accessed? Health & Social Care Information Centre (HSCIC) Office for National Statistics (ONS) UK and Ireland Cancer Registries 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

3. What data are available, and how are they accessed? Data flows Clinicians Charities Policymakers Commissioners Patients 3

4. NCIN tools (and links) 4What data are available, and how are they accessed? Namewebsite Cancer Commissioning Toolkithttps://www.cancertoolkit.co.uk/ CASCADEhttps://nww.cancerstats.encore.nhs.uk/users/sign_in Local Cancer Intelligencehttp://lci.cancertoolkit.co.uk/ Understanding Cancer e-learninghttp://www.mylearningspace.me.uk/moodle/ NCINhttp://www.ncin.org.uk/home

5. Cancer Commissioning Toolkit (CCT) https://www.cancertoolkit.co.uk/ 5What data are available, and how are they accessed?

6. CASCADE https://nww.cancerstats.encore.nhs.uk/users/sign_in 6What data are available, and how are they accessed?

7. Local Cancer Intelligence http://lci.cancertoolkit.co.uk/ 7What data are available, and how are they accessed?

8. Aimed primarily at MDT Co-ordinators/ Cancer Registration staff. Online training to support NHS staff to understand cancer terminology and assist with driving change. Available to all (registration required) 8What data are available, and how are they accessed? Understanding Cancer e-learning http://www.mylearningspace.me.uk/moodle/

9. NCIN website http://www.ncin.org.uk/home 9What data are available, and how are they accessed? Download the ‘What cancer stats are available?’ guide

10. PHE data tools (and links) 10What data are available, and how are they accessed? Namewebsite Public Health Profileshttp://fingertips.phe.org.uk/ Public Health Outcomes Frameworkhttp://www.phoutcomes.info/ Local Tobacco Control Profileshttp://www.tobaccoprofiles.info/ Longer Liveshttp://healthierlives.phe.org.uk/topic/mortality 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/

11. Public Health Profiles (fingertips) http://fingertips.phe.org.uk/ 11What data are available, and how are they accessed? Type in ‘cancer’ in the search box

12. 12What data are available, and how are they accessed? Public Health Outcomes Framework (cancer indicators) NEW: compare indicators http://phoutcomes.info/

13. 13What data are available, and how are they accessed? Local Tobacco Control Profiles (cancer indicators) http://tobaccoprofiles.info/

14. Longer Lives 14What data are available, and how are they accessed? http://healthierlives.phe.org.uk/topic/mortality

15. 15What data are available, and how are they accessed? SHAPE http://shape.dh.gov.uk/index.asp Has indicators on lung cancer, sarcoma and chemotherapy

16. PHE data and knowledge gateway 16What data are available, and how are they accessed? http://datagateway.phe.org.uk/

17. 17What data are available, and how are they accessed? Cancer of Unknown Primary Rare and less common cancers Examples of bespoke analyses

18. 18What data are available, and how are they accessed? Survival by stage Outpatient analysis

19. Routes to Diagnosis 19What data are available, and how are they accessed?

20. Inequalities: deprivation, ethnicity 20What data are available, and how are they accessed?

21. Inequalities: older people, younger people 21What data are available, and how are they accessed?

22. Tumour specific 22What data are available, and how are they accessed?

23. 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 shall be published in early 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 shall be published in early 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 For more information about the release of patient-level data by PHE or to submit an application, contact ODR@phe.gov.uk PHE Office for Data Release What data are available, and how are they accessed?23

24. National Cancer Intelligence Network enquiries@ncin.org.uk ncinanalysts@phe.gov.uk 24What data are available, and how are they accessed?

25. 2015 cancer outcomes conference 25What data are available, and how are they accessed?