1. Data to Action: A Public Health Example Within a Guiding Framework Mathew Christensen, Ph.D. Vickie Thomson, M.A. Colorado Department of Public Health and Environment

2. What are we talking about? “ Data to action, ” simply means using data to improve or guide our intervention Question: How can data improve a large complex system-based intervention like newborn hearing screening? Mass confusion, assumptions, and viewpoints … we all have similar questions. How do we get from point A to point B effectively?

3. Step 1. Recognize the big health outcome or problem we are trying to move. Did you know? Newborn hearing screening exists to improve language and brain development for children with a hearing loss.

4. Step 2. Understand that data do not move health outcomes, interventions move health outcomes Side Note: Interventions must have the capacity to be “ effective ” in moving the outcome. Otherwise, we will simply be using data to improve an ineffective intervention

5. Interventions move outcomes Data are simply used to guide and improve interventions Data guide interventions move outcomes Public health needs to integrate data people program people move outcomes (i.e.,complementary skill sets)

6. Screening is an intervention? Early interventions such as amplification and language stimulation improves language outcomes for children who are deaf and hard of hearing. “ Early ” is key, when language centers in the brain are still forming and malleable Newborn screening leads to early identification of hearing loss, so screening can be viewed as the first stage of a large system-based intervention

7. Colorado Infant Hearing Program Factors that Affect Screening and Follow-up Rates

8. Analyzing an EHDI Program Advisory Committee Improve follow-up Factors associated with missing the screen, rescreen, & late diagnosis Data integration, hospital surveys Conclusions Plan and implement programmatic changes for improvement

9. The Colorado EHDI Follow-up Program: A Historical Perspective

10. Factors that Influenced Improved Follow-up Rates Pressure from the Pediatric Chapter Champion - Al Mehl, MD Integration with the EBC  Track from screening to diagnosis to early intervention  Send accurate MONTHLY reports to hospital coordinators Letter campaign to parents from missed, failed screens (EBC provides demographic information)

11. Population Results from Hospital Screen Births 2001-2004204,694 Screened 200,666 (98 %) Failed8,124 (4%) Rescreened6,686 (82%)

12. Step 3. Understand where our intervention needs improvement Newborn screening: 2% of birth population in Colorado is not screened; 18% who failed the first screen missed the follow-up screen Who are they? Can this be improved?

13. Step 4. Determine if we have useful and credible data available to inform our intervention, or if they need to be collected Note: Not all data are useful for improving or guiding interventions. Some data are simply used to monitor/track health outcomes in the population

14. Newborn screening data The Colorado Department of Public Health and Environment has useful data to improve newborn hearing screening 56 birthing hospitals: vital statistics, birth certificates, and screening results for each infant born in the state … about 70,000 a year

15. Factors Initially Tested Mother’s age Mother’s education Mother’s weight gain Martial status Gestational age Mother Smoke Infant gender Race/ethnicity Hospital Year of birth Birth weight APGAR Scores Urban, rural, frontier populations

16. Step 5. Connect data analysis results to specific recommendations for improving the intervention The connection between the results and recommendations must be clear and transparent to build consensus/support

17. Screening results and recommendations Results: The 1,500 infants not screened each year are much more likely to have poor health than the 98% who are screened Infants in the NICU are also much more likely to have a hearing loss than infants in the well-baby nursery Recommendation: NICU will develop policies and procedures to ensure these high risk infants get screened

18. USPSTF and NICU Screening “ The USPSTF found good evidence that the prevalence of hearing loss in infants in the newborn intensive care unit and those with other specific risk factors is 10-20 times higher than the prevalence of hearing loss in the general population of newborns. Both the yield of screening and the proportion of true positive results will be substantially higher when screening is targeted at these high-risk infants …”

19. Conclusions Lack of reporting results Early discharge Significant health problems Out of state residents (7%) Deceased

20. Screening results and recommendations Results: Follow-up screening disparities exist for mothers with low education and Latina ethnicity Recommendation: Hospital screening staff will receive education/training about improving access to care; successes of single “ safety-net ” hospital will be used to help other hospitals reduce barriers

21. Step 6. Understand that changing/improving interventions often takes time and develops slowly Is the intervention new or well- established? A big system or small?

22. Improving the intervention Disseminate/communicate results and recommendations to everyone involved with intervention implementation/policies Sometimes change is disruptive. Interventions always need some stability. Find a balance between retaining stability and implementing change.

23. Improving screening Journal publication and conference presentations for broad dissemination Colorado special health care needs newsletter, and coordination with the state ’ s audiologist and screening coordinator Beginning stages of change taking shape

24. Conclusions and benefits When used correctly, data can be a powerful tool to improve public health practice and ultimately outcomes Recap: What is our outcome? Is our intervention based on reasonable evidence? Where does the intervention need improvement?

25. Conclusions cont. Do we have useful data? Can we connect clear recommendations to the statistical results? How much time and effort will it take to implement the changes? Thought: I believe scientific methods has the power to improve the public ’ s health. Believe it.

26. Role of Public Health in EHDI Programs Using science as a basis for decision- making and action; Expanding the quest for social equity; Performing effectively as a service agency; Making efforts outcome-oriented; and Being accountable * CDC Operating Principles for Program Evaluation

27. It Takes a Village to Raise an EHDI Program External Advisory Committee Internal Administration Statisticians IT Professionals Program expertise

28. The Role of our Federal Partners Continuing to ‘ raise the bar ’ for EHDI programs Encourage data integration with newborn screening and immunization Support the concept of the child health profile to ensure the Medical Home/PCP are informed of outcomes

29. Outcomes: Happy, Healthy Families Comprehensive Community Based Culturally Competent Seamless Knowledgeable Providers Parent to Parent Support

30. Contact Information: Mathew.Christensen@state.co.us Vickie.Thomson@state.co.us Colorado Department of Public Health and Environment, PSD-HCP A4,Cherry Creek Drive South,Denver CO, 80246