1. Pediatric Healthcare Center of The Future Down the Rabbit Hole Of Healthcare September 4, 2007 Gerri Lamb, PhD, RN Emory School of Nursing

2. Questions to keep in mind What’s the problem? What is the proposed design trying to solve? Could we do it differently, better, less expensively….

3. Design Model: Think Interaction Patient & Family Centered Care Quality Safety Physical Design Technology Care Processes Culture

4. Pivot the Room Who are the Stakeholders?

5. Institute of Medicine Targets: The Big 6 1.Safe – avoid injury 2.Effective – evidence-based, avoid underuse and overuse 3.Patient-centered 4.Timely – reduce waits and delays 5.Efficient – avoid waste including equipment, supplies, ideas, energy 6.Equitable - does not vary in quality due to personal characteristics, eg gender, ethnicity. location, SES Crossing the Quality Chasm, 2001

6. What do children and their families want from health care? Stay Healthy Get Better quickly when ill Live a Good Life with Chronic Illness Die Comfortably and Supported Foundation for Accountability

7. In the words of parents “They (the nurses) would ask me “what do you want me to do?” It was like a partnership….” “(the nurses) were informative and they always answered all my questions” “It was just a different situation, I think. There weren’t all the machines and alarms going off every few minutes. The lighting was different.” (a mother explaining why she thought it was easier to establish rapport with nurses in a less acute area in the hospital – example of intersection of physical design, technology, care process) Espezel & Canam (2003). Patient-nurse interactions: care of hospitalized children. Journal of Advanced Nursing 44(1), 34-41. “Well, nobody really asked, how I felt… they did actually ask me if I would want to stay and I said “I don’t want to but I will” but nobody sort of said, ‘why don’t you want to? Nobody asked” Sartain et al (2001). Users’ views on hospital and home care for acute illness in childhood. Health and Social Care in the Community, 9(2), 108-117.

8. Patient and Family Centered Care “to customize care to the specific needs and circumstances of each individual, that is, to modify, the care to respond to the person, not the person to the care.” IOM, Crossing the Quality Chasm, p.51 Respect for patient values, preferences, needs Coordination and integration of care Information, communication, and education Physical comfort Emotional comfort Involvement of family and friends Gerteis et al, 1993 Through the Patient’s Eyes

9. Typical Survey Questions In the last 12 months, how often did the doctor explain things about your child’s health in a way that was easy to understand? How often did this doctor listen carefully to you? How often did this doctor show respect for what you think? From CAHPS (consumer assessment of healthcare providers and systems) Child Primary Care Survey www.cahps.ahrq.gov/default.asp

10. Care Processes What do health professionals do? How do they do it? assess, build relationships, plan, intervene, coordinate, educate, motivate, monitor, evaluate Intervene Do Evaluate Check & Act Assess Plan

11. Patient and Family Self Care – at home, school, ….. DietExercise SleepTreatments MedicationSymptom Monitoring Seek Care in a timely way

12. What should a child and family-centered environment look like? How does it look, feel, act differently than one that isn’t? Child & Family Centered Care Quality Safety 1.Physical Design 2.Technology 3.Care Processes 4.Culture

13. Resources What do you need to know? About your problem? Care processes, technology, culture, physical design? For health care: Medline, Web of Science Key Words: family, child, parent, hospital, emergency room, home health, sickle cell anemia, asthma, informed decision-making, shared decision-making, patient centered care

14. Patient Centered Care Search Initial search – 4047 references Full text, humans, english, ebm review – 18 Shields et al (2007) Family centered care for children in hospital. Cochrane Database of Systematic Reviews (1) CD004811. State of the science, 135 references Weinstein, et al. (2007). Informed patient choice: patient centered valuing of surgical risks and benefits. Health Affairs 26(3), 726-39. Examples of new shared decision-making software and tools from Dartmouth Medical School Horne, et al (2007). Can asthma be controlled by understanding the patient’s perspective? BMC Pulmonary Medicine, 7:8. Review – 78 references Butz, et al (2007). Shared decision-making in school-age children with asthma. Pediatric Nursing, 33(2), 111-6.

15. Resources Commonwealth Foundation- www.commonwealthfoundation.com Foundation for Informed Medical Decision- making www.fimdm.orgwww.fimdm.org $25,000 dissertation grant Robert Wood Johnson Foundation www.rwjf.org

16. Resources Consumer Assessment of Healthcare Providers and Systems (CAHPS) www.cahps.ahrq.gov/default.asp - Can download standardized surveys of children’s primary care, hospital experience - 8 years of national data on perceptions of shared decision-making, communication, education, and other aspects of patient and family centered care