1. NewSTEPs 360 Application Technical Assistance Webinar - October 15, 2015 Improving Timeliness in Newborn Screening HRSA funded project (Grant No: UG8MC28554) All participants are muted upon entry. Please reserve all questions for the Q&A section at the end. If using computer audio, click on the microphone icon on the bottom left If joining audio by phone, press*6 to mute/unmute

2. Zoom Screen

3. Objectives 1.Overview of NewSTEPs360 2.Application Process a. State vs. Group Application (REDCap) b. HIT Funding Opportunity 3. CQI & 5 Whys Approach 4. MOUs 5. January Kickoff Meeting 6. Q & A

4. Project Overview

5. NewSTEPs 360 Overview Goal: to support states through technical and financial means to achieve timely reporting of results in 95% of newborns that receive a dried-blood spot (DBS) NBS. – At least 20 state NBS programs will receive quality improvement (QI) training and funding – Will build on the infrastructure of NewSTEPs, an existing partnership between the Colorado School of Public Health and the Association of Public Health Laboratories

6. APHL Jelili Ojodu, MPH Sikha Singh, MHS, PMP Careema Yusuf, MPH Thalia Wood, MPH Guisou Pinero, MPH Ruthanne Salsbury APHL Jelili Ojodu, MPH Sikha Singh, MHS, PMP Careema Yusuf, MPH Thalia Wood, MPH Guisou Pinero, MPH Ruthanne Salsbury ColoradoSPH Marci Sontag, PhD Yvonne Kellar-Guenther, PhD Joshua Miller, MPH Sarah McKasson, MPH ColoradoSPH Marci Sontag, PhD Yvonne Kellar-Guenther, PhD Joshua Miller, MPH Sarah McKasson, MPH NewSTEPs 360 Genetic Alliance Natasha Bonhomme Genetic Alliance Natasha Bonhomme NICHQ Shikah Anand, MD, MPH NICHQ Shikah Anand, MD, MPH March of Dimes Edward McCabe, MD March of Dimes Edward McCabe, MD AMCHP Kate Taft, MPH AMCHP Kate Taft, MPH ASTHO Lisa Waddell, MD, MPH ASTHO Lisa Waddell, MD, MPH NCC Mike Watson, PhD, FACMG NCC Mike Watson, PhD, FACMG OZ Systems Terese Finitzo, PhD OZ Systems Terese Finitzo, PhD NBSTRN Mike Watson, PhD, FACMG NBSTRN Mike Watson, PhD, FACMG Partner in CQI Training Partner in Education and Short-term Follow-up

7. Application Process

8. Primary Funding Mechanisms State Applications: – Individual state NBS programs – Only 1 state application permitted per state – $120,000 over three years ($40,000 in Year 1, $50,000 in Year 2, $30,000 in Year 3) Group Applications: – Collaborations between states – Can submit a state and group application – $140,000 over three years ($40,000 in Year 1, $50,000 in Year 2, $50,000 in Year 3)

9. Optional HIT Funding Mechanism Order Reporting OZ Application Add-On: – Individual states may choose to apply for $10,000 per year to work with OZ Systems – Electronic label printing and lab order entry within their programs. – The OZ funding component is optional and independent from the state and group applications and should NOT be incorporated in the budget request.

10. ACHDNC Timeliness Recommendations Presumptive positive results for time-critical conditions should be communicated immediately to the child’s healthcare provider but no later than the fifth day of life. All presumptive positive results for all other conditions should be communicated to the child’s healthcare provider as soon as possible but no later than seven (7) days of life. All NBS results should be reported within seven (7) days of life. Initial NBS specimens should be collected in the appropriate time frame for the baby’s condition but no later than 48 hours after birth. NBS specimens should be received at the Laboratory as soon as possible; ideally within 24 hours of collection.

11. Focus Areas Focus Area 1: Developing education in the hospital, birthing facilities, and/or with midwives (out of hospital births) regarding timely and appropriate collection and shipment of samples. Focus Area 2: Identifying and/or strengthening courier system to deliver newborn screening dried blood spots. Focus Area 3: Expanding operating hours to provide more uniform coverage for newborn screening throughout the week and across holidays. Focus Area 4: Evaluating the efficiency of laboratory processes and/or workflows. Focus Area 5: Communicating results with provider and clinical specialists and ensuring timely diagnostic work-up. (Note: If you select Focus Area 5, you must select an additional focus area related to ACHDNC’s recommendations on timeliness). Focus Area 6: Using Health Information Technology to improve timeliness through electronic demographic and order submission and result reporting.

12. Applicant Requirements State teams must include 5 members / Group teams require 1 representative from each state on the team. One team member will act as the primary contact for the proposal In-person meeting January 2016 Engage in CQI activities (monthly calls, coaching, in-person meetings) Provide monthly timeliness Quality Indicator data (this will require an MOU signed with NewSTEPs within the first year of funding). Obtain signatures from: 1.The individual that oversees the NBS program. 2.Designated financial signing official for your institution.

13. How to Apply All application materials are available at https://newsteps.org/newsteps-360. https://newsteps.org/newsteps-360 Applications must be completed and submitted electronically via REDCap. Interested applicants must contact Joshua Miller (joshua.i.miller@ucdenver.edu) to receive a unique application link for your team.joshua.i.miller@ucdenver.edu

14. HIT Timeliness Options In case HIT wasn’t confusing enough……..

15. HIT Option 1 – State Application NBS programs may choose to improve timeliness by submitting a state application Focus Area 6: Using Health Information Technology to improve timeliness through electronic demographic and order submission and result reporting. Your goals & objectives for Focus Area 6 can include: 1.Development of a system independent of a vendor or in collaboration with a vendor of your choosing that creates a label and sends the demographic information from the hospitals to the lab. 2.…sends results from the lab to medical providers, PCP’s, etc. 3.Prepare your lab for HL7 messaging 4.Etc.

16. HIT Option 2 – Group Application NBS programs may choose to improve timeliness by submitting a group application Focus Area 6: Using Health Information Technology to improve timeliness through electronic demographic and order submission and result reporting. The group application promotes collaboration across states. The group application may be dedicated entirely to HIT if you wish. The application may touch on various aspects of HIT such as HL7 messaging, creating Lab Order Entries, printing labels, Health Information Exchange, etc.

17. HIT Option 3 – OZ Systems Application Add-on NBS programs may choose to improve timeliness by submitting a state or group application and including the OZ Systems Application add-on. OZ Telepathy System: – Will connect to hospitals EHR – Print demographic labels for DBS cards – Prepare the hospital to send HL7 Lab Order Entry message $10k/year | Must reapply each year | New states can apply each year States can apply for this independent of the LIMS vendor they work with. Money goes directly to OZ. OZ works with the hospitals. Provides introductory letter template from NBS program to hospitals.

18. HIT Options Disclaimer 1.The OZ Systems add-on is 100% optional and cannot be applied for independent of the state and group application. 2.The additional $10,000 for the OZ application is only applicable to the OZ application. 3.OZ Telepathy is currently the only commercially available application specifically geared toward developing a NBS label and sending a NBS lab order entry directly from the hospital. 4.OZ is willing to work with any LIMS vendor to develop systems for HL7 interoperability, and the system is independent from the LIMS systems used within a state (all states can apply for this, independent of their LIMS vendor). 5.NBS programs can apply for funding to improve HIT through a combination of the state application, group application, and OZ add-on. 6.NBS programs may work with any vendor they wish to improve their HIT initiatives. 7.They may also work on HIT initiatives independently (no vendor).

19. Continuous Quality Improvement (CQI) & 5 Whys Approach

20. Continuous Quality Improvement Starting the Process as Part of the Application – Identifying the Problem The 5 Whys Approach to Find the Root Cause – Choosing the Focus Area(s) Based on the Root Cause(s) Identified – Choose the Team Based on the Focus Area(s) and Root Cause(s) – Writing SMART Goals and Objectives

22. 5 Whys – A Tool to Identify the Root Cause

23. 5 Whys Steps 1.Gather team and develop problem statement in agreement 2.Ask the first “why”: Why is the problem taking place? Record on flip chart/whiteboard/index cards. 3.Ask four more successive “whys” 4.Settle on the most systematic cause.

24. 5 Whys Overview This becomes your subgoal to move toward your goal. You will write a SMART aim statement for this

25. Another Way This Might Look – Problem First Why Second Why Third Why I weigh 10 pounds more than desired weight Consuming too many calories Don’t move much during the day Eat too many snacks at night At night I reward myself for a tough day with chocolate Eat while watching TV and relaxing Have desk job Too tired to work out at after work What might a countermeasure or subgoal look like for this path?

26. 3 Elements to Using Five Whys Effectively Accurate and complete statements of the problem Complete honesty in answering the questions Determination to get to the bottom of the problem and resolving it

27. Tools to Help Videos on Youtube (links are in the Application) Appendix A is designed to help you think through the 5 whys – Use it for each “problem” your team identifies

28. Tips Choose problems that you think you can have an impact on within the 3 years of funding – Maybe choose a change you can make quickly as well as a change that will take longer

29. SMART Goals & Objectives

30. What is SMART? Specific Measurable Attainable Results Focused Time Specific/Time Bound Another take: What will improve? When will it improve? How much will it improve? For whom will it improve?

31. Sample SMART Objective By November 2016, our program will increase the percentage of DBS samples received by the lab within 24 hours from 90% to 95% by providing a courier service to rural hospitals. This is specific because we know who (our program) is doing what (increasing the percentage of DBS samples received) and where (at the lab). This is measurable because we know the amount of change (90% to 95%). This is attainable because we know our baseline (90%) and we believe we can achieve a 5% increase by November 2016. This is based on the resources the program believes they can allot toward this project. This is relevant because, based on an assessment of our program, this is an area for improvement, and based on our 5 Whys, the lack of samples received within 24hours from rural hospitals is an issue we need to address to improve timeliness. This is time bound because I know our team has to reach 95% by November 2016.

32. Tools to Help Videos on YouTube Appendix B – Use it for each goal your team identifies

33. Tips We limit you to 3 goals – You may do less – Think through the resources you have to put towards each goal and the project overall

34. Memorandum of Understanding (MOU)

35. MOUs are part of the NewSTEPs umbrella; between APHL and each state MOUs need to be in place by end of Year 1 because of data sharing Language includes: – Data ownership – Data sharing – Data reporting – Security language – IRB and OHRP language (attachments to include letters and applications) Contact Careema Yusuf for questions (careema.yusuf@aphl.org or 240-281- 2674)

36. Kickoff Meeting

37. January Kickoff Meeting Tentative Dates: January 21-22, 2015 Place: Washington, DC area (exact place TBD) Travel costs will be covered for up to 5 team members

38. Questions?

39. Contact Information Application: Joshua Miller (Joshua.I.Miller@ucdenver.edu or 303.724.4438)Joshua.I.Miller@ucdenver.edu OZ System: Terese Finitzo (tfinitzo@ozsystems.com or 214.616.4321)tfinitzo@ozsystems.com MOU Careema Yusuf (careema.yusuf@aphl.org ; 240.485.2761)careema.yusuf@aphl.org Quality Improvement Yvonne Kellar-Guenther(yvonne.kellar-guenther@ucdenver.edu; 240.281.2674)yvonne.kellar-guenther@ucdenver.edu