1. The Big Picture Jane O’Hallahan Clinical Director National Screening Unit

2. Which approach? a nationally led programme with all aspects of the screening pathway implemented and monitored centrally a nationally led quality improvement programme with the development of national guidelines alongside DHB implementation and monitoring sector led implementation with screening part of improvements in routine care

3. Criteria for screening programmes The condition is suitable for screening There is a suitable test There is an effective and accessible treatment for the intervention for the condition identified through early screening There is evidence that the programme is effective in reducing mortality and morbidity Potential benefits outweigh harms There is appropriate follow-up and programme evaluation There is consideration of social and ethical issues Cost-benefit

4. Principles 1.Benefits of screening outweigh the harm 2.People centred 3.Achieve equitable access to the screening pathway and equitable outcomes for all populations 4.Informed consent a priority throughout the screening pathway. 5.Monitored and evaluated regularly 6.Continuous quality improvement in programme management and clinical service delivery

6. Essentials of Screening 1. A central agency to lead and co ordinate the screening pathway 2. Clinical Governance 3. Infrastructure and systems to manage a screening programme 4. Monitoring and evaluation 5. Quality cycle

7. A central agency to lead and co ordinate the screening pathway Leadership on equity Standards and indicators Research and evaluation Workforce development

8. Clinical Governance National Screening Advisory Committee DHB

9. Infrastructure and systems to manage a screening programme Fit for purpose population registers Policy framework

10. Monitoring and evaluation Individual performance monitoring Programme monitoring Programme evaluation Ethnicity data accuracy Contract monitoring

12. The incident in a nutshell 4.5 million kiwis 60,000 annual births 20 DHBs 150 screeners 14 not following protocol 5000 incorrectly screened (~3yrs) 30 % responded to recall 9 babies identified 18 months

13. Key learnings 1.Robust coordinator role & training 2.Day to day oversight & support for screeners 3.Rigorous data monitoring (refer rate, timings) 4.Screeners aware of data monitoring 5.Open culture to avoid “hiding” mistakes 6.Governance in DHB

14. Quality Cycle Incident management Public reporting Audit Plan Do Study Act cycles (PDSA)

15. Essentials of Screening 1. A central agency to lead and co ordinate the screening pathway 2. Clinical Governance 3. Infrastructure and systems to manage a screening programme 4. Monitoring and evaluation 5. Quality cycle

16. Quality needs to drive screening. If adequate quality components are not in place, screening programmes should not operate, and new screening programmes should not be started.