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Need for a data on CSHCN: Will the Rising Tide Lift all Rubber Duckies?

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Need for a data on CSHCN: Will the Rising Tide Lift all Rubber Duckies?

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  1. From Data to ActionMaximizing the use of the National Survey on Children With Special Health Care NeedsThe 2003 Ninth Annual Maternal and Child Health Epidemiology ConferenceDecember 10-12, 2003 Christina Bethell, PhD, MBA, MPHDebra Read, MPHNora Wells, MedPaul Newacheck, PhDThe Child and Adolescent Health Measurement Initiative and Family Voices

  2. Need for a data on CSHCN:Will the Rising Tide Lift all Rubber Duckies?

  3. The Ideal Developmental Trajectory of a Data Element • Gestation and Birth (well conceived) • From data to information • From information to knowledge • From knowledge to action • From action to outcomes • From outcomes to evidence • From evidence to action!

  4. From Information to Action: Using Data to Stimulate System Change Taking the First Step: Efficient, Accurate and Effective Use of Data

  5. Using data to stimulate system change: The QUEST! • Question: What is the actionable question? • Understanding: What are the relevant variables, measures and analysis to address the question? • Efficiently and effectively analyze data • Synthesize and summarize results in a relevant manner for each audience • Tell the story and take action!

  6. Using Data “RECIPE”

  7. The Journey: From Data to Action Collecting data -- starting where you want to end up! Convening key stakeholders and identifying partnerships Engaging stakeholders in analysis and review of results translating to action plans Communicating to the broader audience to stimulate action

  8. Taking the Next Step: Ensuring Data is available for mulitple layers and audiences National and State Front-Line Health Care Providers Health Plans Consumers: Parents-Guardians of CSHCN

  9. MAXIMIZING Quality Information

  10. For more information or to give us your ideas and feedback! • www.cshcndata.org • www.cahmi.org • childs@kpchr.org • christina.bethell@kpchr.org • debra.bethell@kpchr.org

  11. Developing Sustainable Data Use Strategies that Meet Multiple Needs Purchasing & Contracting Federal & State Reporting Quality Improvement Consumer Information

  12. Comprehensive Change Strategy Requires Comprehensive Approaches to Measurement and Reporting • Family Driven Strategies • State Driven Strategies • Policy Driven Strategies • Provider Driven Strategies

  13. Change is FIICCL!: Data is Needed at Each Step • Financing • Incentives • Information • Capacity • Culture • Leadership

  14. Limits of diagnostic data Diagnosis Adm. Data Prevalence Epidemiologic (CRG method) Studies Asthma 1.97% 4-6% ADHD 3.08 2.5-4.0 Cystic Fibrosis .03 .02 Cerebral Palsy .02 .02-.05 Diabetes .17 .10-.20 Learning Disorder .39 > 5 Malignencies .07 .08 Mental Health Conditions 5.54 6-12 Mental Retardation .25 .4-3

  15. Comparing Identification Methods • No encounter records ≠ no special needs • 40% of CAHPS eligible sample had no enc. records (WA State Medicaid managed care study, 2000) • 20% of grp with no enc. records met CSHCN Screener • Not all CSHCN identified using a consequences-based survey approach will have a recorded diagnosis Group identified by CSHCN Screener • 84%also met 3M CRGs criteria for “chronic” Group NOT identified 3M CRGs • 11% met CSHCN Screener

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