Poster Presentation Cancer Survivorship Conference 2023

How do we safely identify survivors and help them share their 'lived experience' of living with blood cancer?   A project summary depicting how the Leukaemia Foundation used a digital solution to drive organisational-wide change to respond to primary survivorship needs. (#113)

Matthew Eby 1
  1. Leukaemia Foundation, Northfield, SA, Australia

Background: 

Leukaemia Foundation has consistently received feedback from patients, caregivers and bereaved families who have lived experience of blood cancer indicating a strong motivation to ‘give back’ or be involved in organisational activities. 

Historically, Leukaemia Foundation fulfilled this primary survivorship need utilising an ad-hoc approach that lacked elements of coordination, organisational structure, as well as a system that incorporates a supportive care framework for the participant and a heightened level of quality assurance.  

 

Objectives: 

  1. Provide a new survivorship service that addressed the unmet need to give back to their blood cancer community and created meaning from their lived experience 
  2. Reach existing and new audiences through a digital solution 
  3. Embed a consumer program that allows the patient, carer or bereaved to define their level of engagement and participation 
  4. Deliver a program within best practice and clinical governance via a healthcare-trained staff member 

 

Discussion:   

These changes to practice align more closely with the Clinical Governance Framework (i.e., Partnering with Consumers) as defined by the Australian Commission on Safety and Quality in Health Care.  In addition, this project served as a response to COSA's Model of Survivorship Care which highlights unmet needs among survivors as they seek to transition from recovery to wellness, including advocating for themselves and others in the broader community. 

The establishment of a Consumer Group has supported the organisational strategy to be patient first by embedding the consumer voice in our programs and services while empowering the consumer to define their role and relationship in this survivorship offering. 

 

Future Directions:   

  1. Continue to diversify the Consumer Group membership and amplify the voice of underrepresented populations 
  2. Provide opportunities and training to members of the Consumer Group, especially for those engaging in higher-level consumer involvements (e.g. governance committees).