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

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

Dec 01, 2022 111 likes •400 views

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

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Dr Yvonne Belessis

Respiratory Medicine MBBS(Hons) FRACP MPH PhD

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 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
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 North American CFF Data Registry  Australian CF Data Registry

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

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1.Paediatric

  • 1. Paediatric
  • 2. Paediatric
  • 1. Paediatric
  • 3. Paediatric
  • 2. Paediatric
  • 2. Adult
  • 1. Adult
  • 3. Adult
  • 2. Adult
  • 1. Adult
  • 1. Adult

11 Paediatric and 11 Adult

National CF database 1998 Public Reports 2012

3, 200 Australians with CF

  • 1. Paed/ Adult
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 3 major parameters

  • (Predicted) Survival, Lung Function, Nutritional Status
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 Genotype  Mode of Diagnosis  Respiratory Infections  Hospitalisations  CF Related Diabetes  Adherence: chronic therapies  Hospital in the Home  Transplantation  Marital status  Education  Occupation

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

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

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Who Does All This Work?

Rhonda: “The Mega-Multitasker”

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 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
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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

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 “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

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 SCH Inaugural CF Parent Advisory Council meeting

4th 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.

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

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 New CF Parent Advisory Council

  • Chair: Jen Stumbles