1. JANET DESGEORGES DECEMBER 7, 2012 ORLANDO, FL BREAKOUT SESSION I Quality Improvement – What Does It Mean and How am I Involved as a Parent? You, excited abut PDSAs!

2. Goals of this Session Introductions Review basic overview of the quality improvement model Improving improvement ‘parent style’

3. Janet’s ‘real’ introduction My ‘day’ job  www.handsandvoices.org “How I really feel (felt) about QI”  The cynic within  Please, no more acronyms Ugh…data  There’s a ‘family’ behind that number Leaning into the project  Learn the model  Challenge the process  Keep it real

4. Introduce Yourself Your 30 second life story Finish one of these statements: “A shining moment in the life of my journey/child that I wish we could ‘systematize’ for all was…” Or “A terrible moment in the life of my journey/child that I wish we could ensure will never happen to anyone else was…”

5. copyright (c) Hands & Voices 2011 Where are we going? How are we going to get there? What is the measure of success? Statistics? Bureaucratic system in place? How will we know we’ve ‘gotten there’? “There is no ‘there’ there….” -Gertrude Stein

6. Model for Improvement

7. Aim: I want my husband to do the dishes Measures: How often will he do the dishes over the next week? Pre-work: Recorded 0 attempts in the last five days Change Ideas: -Create a chart -Institute a reward policy -Nag Model for Improvement

8. PDSA Objective for this PDSA Cycle (Aim): PLAN:  Questions  Predictions  Plan for change or test: who, what, when, where  Plan for collection of data: who, what, when, where DO:  Carry out the change or test  Collect data and begin analysis  Report the results of your test, describe observations, problems encountered, and special circumstances STUDY:  Complete analysis of data; summarize what was learned ACT:  Are we ready to make a change? Should modifications or refinements be made to the test?  Plan for the next cycle

9. Putting the Parent Spin on QI work This has to make sense to us This has to be a process that actually asks and answers critical questions The goal is to make things better Don’t get bogged down by D-A-T-A (but understand it) Don’t let the ‘model’ drive you

10. “JDEA slide 5(b)VII(A).213-/c/” Change Package THE DRIVER: “O1-5: Optimal outcomes for patients and families” P1. Medical homes S1.3 Educate PCP FROM: “Let’s just wait and see what happens” TO: “Let’s check to see if your screening results are in your file”

11. The CHANGE has to show up in families’ lives…

12. Activities of Parents in Past Collaboratives Parent road maps Development of parent survey of care Revising letters that went out to families in the system Delivery of information to families verbally and in writing  How are we going to track this?  Can we ask the families? PCP information – the fax back PDSA  Did it affect physician/parent conversation? Parent-driven questionnaires used in training sessions for primary care physicians in rural areas Looking at the ‘when’ and not just the ‘what’ in delivering screening results  What happened when we were telling each other our stories

13. PDSAs about Verbal and Written Information Delivered to Families The ‘scripted’ message and beyond:  The parent story in the hospital nursery  The motivation and time constraints of nurses  The parent perspective letter “From a family perspective, I anecdotally hear all the time from parents that their takeaway (or what they remember) from a failed hearing screen was, ‘They told me it was fluid in the ears.’ Imagine if we could track verbal and written information to families so we'll never hear this again!” IS YOUR TEAM TESTING THE RIGHT THING?

14. Help Us Become Better Health Care Partners: We Want Your Feedback! DIRECTIONS: For each question, please check the response that answers the question or best describes your recent experiences. We value your honest responses. Your answers will be kept private and confidential. Thank you so much for your time! 1. When your child had his/her hearing screened in the hospital for the first time, how were the results delivered to you? Please see the definition of the term “hearing screening” below. Never received results in hospital VerballyIn writingVerbally and in writing I don’t remember   NEWBORN HEARING SCREENING: Hearing screening programs are called "universal" because the goal is to test all newborn babies. This means that babies in both the regular and intensive care nurseries are screened before they leave the hospital (or within 3 weeks of hospital discharge). Many people refer to screening programs by the name Early Hearing Detection and Intervention (EHDI). This title is popular because detecting a hearing loss is just the first step. ( definition taken from www.babyhearing.org ) 2. When you visited your primary care provider for your first well-baby visit, did they have the results of the newborn hearing screening in their records? NoYesDon’t Know  Health Care Provider may be:  Your family physician or pediatrician  Well baby Clinic  Physician’s assistant or clinic nurse  Nurse practitioner

15. “This was one of the most empowering projects I’d ever worked on because my voice was an equal one. I felt like I was really helping to make changes in areas that had been big problems for me and my child.” –Parent QI Team Member “I learned so much about physicians’ constraints and have a better understanding of and compassion for their frustrations.” –Parent QI Team Member

16. What they say about you…

17. The Power of Parents 1 Parent = A fruitcake 2 parents = A fruitcake and a friend 3 parents = Troublemakers 5 parents = “Let’s have a meeting” 10 parents = “We’d better listen” 25 parents = “Our dear friends” 50 parents = A powerful organization From the Parent Leadership Associates www.plassociates.org 1 Parent = A fruitcake 2 parents = A fruitcake and a friend 3 parents = Troublemakers 5 parents = “Let’s have a meeting” 10 parents = “We’d better listen” 25 parents = “Our dear friends” 50 parents = A powerful organization From the Parent Leadership Associates www.plassociates.org

18. Institute for Family-Centered Care www.familycenteredcare.org Hopeful Parents www.hopefulparents.org Patient Decision Aids www.decisionaid.ohri.ca