Dr Yvonne Belessis Respiratory Medicine MBBS(Hons) FRACP MPH PhD - PowerPoint PPT Presentation

Dr Yvonne Belessis Respiratory Medicine MBBS(Hons) FRACP MPH PhD

 1. Transparency:  Patient Data Registries  Objective information  2. Benchmarking:  What the “Best” CF centres do better  CF Team , Guidelines, Clinical Programs, Research  3. Families and Professionals:  Working together to improve outcomes  Quality improvement initiatives

 North American CFF Data Registry  Australian CF Data Registry

CFF created 1955 CFF DR created 1966 >100 CF Centres 27,000 Participants (2012) Public reporting 2006

11 Paediatric and 11 Adult National CF database 1998 Public Reports 2012 3, 200 Australians 2. Paediatric with CF 2. Adult 1.Paediatric 3. Paediatric 1. Adult 3. Adult 1. Paediatric 1. Adult 1. Paed/ Adult 2. Paediatric 2. Adult 1. Paediatric 1. Adult

 3 major parameters  (Predicted) Survival, Lung Function, Nutritional Status

 Genotype  Mode of Diagnosis  Respiratory Infections  Hospitalisations  CF Related Diabetes  Adherence: chronic therapies  Hospital in the Home  Transplantation  Marital status  Education  Occupation

 North American CFF Data Registry  Australian CF Data Registry  SCH CF Clinic Peer Review Report

http://www.cysticfibrosis.org.au/projects/dataregistry/

Who Does All This Work? Rhonda: “ The Mega-Multitasker ”

 US CFF  Benchmark Teams  Top CF centres (10 Paed+10 Adult)  Guidelines/ Processes/Teams  Quality Initiatives: Nutritional/Pseudomonas rates  Mentoring Taskforce ▪  Learning and Leadership Collaborative  CF Clinic Peer Review ▪ every 5 years  Australian Centres  VIC/QLD/NSW/ACT First Peer Reviews performed  SA/WA to go

Who are they? Paed CF Director Adult CF Director Adult Dietician Paed Physiotherapist Adult Social Worker Parent Adult CF Nurse Consultant Adult with CF CFA Admin

 “To create the conditions for organisational improvement you need to start with people and emphasise the things they can do to make a difference.” CF mother , CFF Learning and Leadership Collaborative Instructor

 SCH Inaugural CF Parent Advisory Council meeting 4 th June  8 parents, Amanda, Karen, John W., Yvonne, Mike,  Improve delivery of services and communication ▪ Mentoring for new families ▪ Regular Updates/ New Information ▪ Infection Control- new Pseudomonas/MRSA/other ▪ PICC lines ▪ Hospital in the Home  Unanimously endorsed Inaugural Chair: C.F.P.A.C.

CF Families + Team CF Parent SCH Advisory Management Council SCH Parent Council

 New CF Parent Advisory Council  Chair: Jen Stumbles