1. Putting Bright Futures into Practice by Engaging Parents Christina Bethell, PhD, MBA, MPH, Pediatrics, OHSU, Child & Adolescent Health Measurement Initiative, Portland, OR, Kasey McCracken, MPH Pediatrics, OHSU, Child & Adolescent Health Measurement Initiative, Portland, OR, Colleen Reuland, MS, Pediatrics, OHSU, Oregon Pediatric Improvement Partnership, Portland, OR

2. American Academy of Pediatrics October 2011 PreSIP Discussion Agenda for Call Brief overview of CAHMI Engaging Patients – Why is it needed? Operationalizing Bright Futures – Harnessing the Power in Patient Engagement Overview of patient engagement tools current in use 2

3. American Academy of Pediatrics October 2011 PreSIP Discussion About the CAHMI Who We Are: The Child and Adolescent Health Measurement Initiative (CAHMI) is a national, not-for-profit initiative based out of Oregon Health and Science University in the Department of Pediatrics in Portland, OR. Originally housed at FACCT - Foundation for Accountability, the CAHMI was established in 1997. Our Evolving Mission: “To ensure that children, youth and families are at the center of quality measurement and improvement efforts in order to advance high quality consumer-centered health care.” “Providing data and inspiring partnerships to improve health care promote lifelong health for children, youth and families.” 3

4. American Academy of Pediatrics October 2011 PreSIP Discussion Key Topics Addressed by CAHMI Tools Coverage and Access Insurance coverage, gaps in coverage and impact of uninsurance and type of coverage Adequacy of insurance Timely access to covered/needed care Quality & Equity Medical home for all children and children and youth with special health care needs Mental, emotional and behavioral health Health disparities for vulnerable populations (minorities, low income, by health status/CSHCN) Prevention and Healthy Development Childhood obesity (BMI, Activities, TV watching, etc) Early childhood development Transition to adulthood 4

5. American Academy of Pediatrics October 2011 PreSIP Discussion Application of Measures NQF Ratified/Endorsed: 1.CAHMI Promoting Healthy Development Survey (PHDS) 2.CAHMI Young Adult Health Care Survey (YAHCS) 3.Developmental Screening –CAHMI Steward with NCQA 4.CAHPS-CCC (CAHMI led initial development of prior to NCQA endorsement) 5.21 Measures from the National Survey of Children’s Health (NSCH) and National Survey of CSHCN, including Medical Home Insurance Adequacy Gaps in Insurance (Duration) Care Coordination Developmental Screening Transition to Adulthood for CSHCN School and Community Measures Health Risks (BMI; Smoking in Home; Dental Carries/Decay) and Behaviors (Physical Activity) 5 CAHMI Measures Endorsed by the National Quality Forum

6. American Academy of Pediatrics October 2011 PreSIP Discussion Data In Action Focus 6

7. The Good News! Patient-centered care, engagement and choice are included as strategic pillars of prominent policy and improvement efforts We have moved beyond the “feel good” interpretation of patient- centered care and “us vs. them” interpretation of engagement and choice. Growing consensus that good quality care and health outcomes is substantially related to whether consumers and patients are able to play a significant role in selecting, managing and evaluating their own care. Patient-Centered Quality Measurement & Improvement: Why is it needed?

8. Why are Patient-Centered Measurement Tools Needed To Improve in Well-Child Care ?  Efforts are needed to improve well-child care  Assessments of quality for well visits show 9 out of 10 children receiving well visits miss one or more of basic aspects of recommended care. Parents report they wish they had received this care.  Sig. variation in quality of care by : Child and family characteristics; Provider; Office System Within provider variation is as large as across providers  Well-child care is primarily about educating and empowering the parent/family to promote child’s development Parent- based data needed about whether informational needs are met and status of child and family health  Yet, the parent/patient voice is often missing in efforts to assess and improve quality--despite the fact that  patients are often the most valid source for quality measurement and  are essential partners in improvement

9. American Academy of Pediatrics October 2011 PreSIP Discussion Operationalizing Bright Futures The New Challenge of the Revised Guidelines The revised guidelines call for the provider to “attend to the concerns of the parents” as a first priority for the visit. How can pre-visit tools support providers to address parents’ priorities?

10. Overview of HRSA/MCHB R40 Funded CAHMI/OHSU Patient-Centered Quality Measurement and Improvement Project (2/08-2/12)

11. Using the CAHMI Promoting Healthy Development Survey (PHDS) Using the CAHMI Parent PlanYourChildsWellVisit (PCW) Online Tool and Parent Information Integrated into the EHR “Enhanced Encounter” Well Child Care Model Using the Provider and Clinic Specific “Provider Feedback Reports” from the Promoting Healthy Development Survey (PHDS)

12. Baseline Quality Measurement Homepage for Online PHDS (www.childrensclinicsurvey.com)

13. American Academy of Pediatrics 2011 National Conference and Exhibition Provider Feedback Report on the PHDS

14. American Academy of Pediatrics October, 2011 PreSIP Discussion Parent-Centered Quality Improvement Tool: Plan My Child’s Well Visit Tool (Paper-based Tool)

15. Bright Futures Recommendation: Where it is in the Online PCW Tool Part 1: Open-ended questions 1.Share with me one thing that your child is able to do that you're excited about: 2. Are there any specific concerns you would want to discuss at your child’s upcoming well-visit? 3.Have there been any MAJOR changes in your family lately? Check all that apply. 4.Do you have concerns about your child’s learning, development or behavior? Part of developmental surveillance

16. Shared Encounter Form: Example Related Bright Futures Recommendation Anticipatory Guidance & Parental Education

17. 3.Child & Family Health Screening Page 1: SHARED ENCOUNTER FORM (SEF) Related Bright Futures Recommendation

18. 4. Developmental Surveillance Page 1: SHARED ENCOUNTER FORM (SEF) Related Bright Futures Recommendation

19. SEF FRAMEWORK FOR FORMATTING: DESIGNED FOR EASY USE/SCORING Developmental Surveillance Bold are milestones 90% children do (rec. screening) Non-bold – give ASQ Learning Activity

20. 3.Child & Family Health Screening Page 1: SHARED ENCOUNTER FORM (SEF) Related Bright Futures Recommendation

21. SHARED ENCOUNTER FORM (SEF): PAGE 2 (Copy Goes to Parent)

22. American Academy of Pediatrics October 2011 PreSIP Discussion Parent-Centered Quality Improvement Tool: Plan My Child’s Well Visit Tool: Demonstration http://www.youtube.co m/watch?v=KQMtCoF cWlA

23. Online PCW Tool – Content Part 1: Child & Family Health Screeners 1A : Open-ended questions about strengths, questions or concerns, changes in the home 1B. General Child Health Screening Questions Included The Children’s Clinic’s Lead and TB Screeners 1C: Developmental Surveillance, and, where applicable, a PDF of the ASQ. 1D: Screeners Assessing for Issues in the Family that Impact the Child Part 2: Anticipatory Guidance & Parental Education 2A. Parent picks their top three priorities 2B. Education about recommended topics: -- Can be assessed before OR after the visit. -- So it can be referenced by provider during visit.

24. American Academy of Pediatrics October 2011 PreSIP Discussion Additional PCW Features: Developmental Screening 9, 18, & 24 Month Visits

25. American Academy of Pediatrics October 2011 PreSIP Discussion Extending the Well Child Care Visit: Online Educational Materials Via the PCW

26. American Academy of Pediatrics October 2011 PreSIP Discussion Extending the Well Child Care Visit: Parent Visit Guide

27. American Academy of Pediatrics October 2011 PreSIP Discussion Getting the Parent’s Voice into the EHR: Mapping to the Existing EHR Forms EHR Forms Updated to Align to Bright Futures through this process PCW SectionRelated EHR Forms 1A: Open-ended questionsNurse Intake Form Developmental Screen Form Assessment of the Family (New Form) 1B: General Child Screening/TCC Lead & TB Screeners Nurse Intake, Assessment & Plan TB/Lead 1C: Developmental Surveillance & Screening Developmental Screen (ASQ not imported) 1D: Screeners Assessing for Issues in the Family/Home Nurse Intake Form Assessment of the Family (New Form) 2: Anticipatory Guidance/Parent Education Anticipatory Guidance

28. American Academy of Pediatrics October 2011 PreSIP Discussion Examples of the EHR Feed: Open Ended items [Parent report: She can say so much lately. It is fun to hear the new ] [Parent report: Should she be interested in toilet training?]

29. American Academy of Pediatrics October 2011 PreSIP Discussion Examples of the EHR Feed: General Child Screeners

30. American Academy of Pediatrics 2011 National Conference and Exhibition Findings Sneak Peak! PCW Usage Summary: June, 2010-Sept, 2011 2076 Completed tools (2139 started tool) 43.2% response rate as of September, 2011 – varies by age of child, up to 52.2% for 6 month old visits Median Completion Time: 9 min

31. American Academy of Pediatrics October 2011 PreSIP Discussion What Parents Think: Some Early Findings Interim Results from Follow-up Survey (N=154) Overall Value 91.7% of parents reported that they would recommend the PCW to other parents 85.2% of parents reported that the tool helps to prioritize topics to discuss with the health care provider Acceptability 91.2% of parents reported that they were comfortable with the amount of time that it took to complete the tool

32. American Academy of Pediatrics October 2011 PreSIP Discussion PCW Usage Summary: June, 2010-Sept, 2011 Top 5 Priorities Picked (Across all Ages) Visit Priorities Number of Selections Behaviors to expect in the next few months887 Ways to guide and discipline your child482 Your child’s moods and emotions231 How much and what kinds of food your child eats 197 How much food your child needs, weight gain174

33. American Academy of Pediatrics 2011 National Conference and Exhibition What Parents Think: Some Early Findings Usefulness of PCW Features: Percentage of Parents Reporting Feature as “Extremely” or “Very Useful” Ability to complete questions at home98.70% Ability to complete the tool before every visit, with age- specific questions96.70% Delivery of report to provider before the visit90.50% Availability of customized Visit Guide to take to the visit 66.90% (12.8% A Little/Not at all) Availability of a report to keep as a record for the family 57.80% (17% A little/Not at all) Access to online educational materials 83.20% (4% A little/not at all)

34. American Academy of Pediatrics October 2011 PreSIP Discussion What Parents Think: Some Early Findings Parent Report of Whether the PCW Section Helped them to Identify Topics to Discuss with Their Child’s Doctor or Healthcare Provider YesSomewhatNot Really Child Health Screener. Topics about your child’s health 58.4%20.8% Assessment of the Family. Topics about you and your family 46.3%23.1%30.6% Developmental Surveillance. Topics about your child’s development and what he or she is able to do 80.8%13.5%5.8%

35. American Academy of Pediatrics October 2011 PreSIP Discussion What we hear! Parents: “I didn’t get my email!” Providers: “I can’t live without my CAHMI visits”

36. American Academy of Pediatrics October 2011 PreSIP Discussion Next Steps Analyzing Evaluative Data Parent report – using the PHDS Provider surveys and focus groups Exploring funding and partners for next step Beta test of existing tool focused on well-child care for young children Development of tools for other populations/needs Example: Children with special health care needs 36

37. Thank You Christina Bethell, PhD, MBA, MPH Director, The Child and Adolescent Health Measurement Initiative bethellc@ohsu.edu Kasey McCracken, MPH mccrackk@ohsu.edu For additional information about the PCW, contact cahmi@ohsu.edu Colleen Reuland, MS Executive Director: Oregon Pediatric Improvement Partnership reulandc@ohsu.edu