Vicki Durston: Highlighting the Power of Patient Advocacy

Vicki Durston, President of the General Assembly at ABC Global Alliance, shared a post on LinkedIn:  .

“Highlighting the Power of Patient Advocacy.

At the recent MASCC conference in Lille, Lesley Turner from Independent Cancer Voices in the UK joined me to discuss the importance of utilising advocates through co-design and right from the beginning of research development. Her comprehensive training program mirrors BCNA’s ‘Seat at the Table‘, emphasising the significance of well-trained advocates in shaping healthcare outcomes.

Lesley‘s work, along with Erik Briers’ contributions, highlights the crucial stages of patient advocacy:

1. Being a Patient: The experience of being a patient allows individuals to tell their personal story, offering unique insights into the healthcare journey.
2. Patient Expert: Patients who delve deeper into understanding their condition and treatments, becoming well-versed in their own care.
3. Patient Advocate: These individuals extend their knowledge to support and advocate for others, using their experience to drive change.
4. Patient Advocate Expert: Highly trained advocates who possess extensive expertise and can influence policy and healthcare practices effectively.

In Australia, we often refer to these roles as consumer representatives, highlighting their critical function in ensuring the patient voice is heard. Importantly, the role of a cancer consumer representative doesn’t need to be defined by tumor type. Their lived experience, combined with professional skills and our training programs, extends their capabilities to have a seat at the table for healthcare and cancer more broadly.

What type of advocate/ consumer representative do you need for your work? How can we recognise and leverage the expertise of these dedicated individuals to drive meaningful change?

Let’s continue to build synergies between our countries’ programs and support the incredible work of patient advocates/ consumer representative like Lesley Turner and Erik Briers. Together, we can ensure that the patient voice remains at the forefront of healthcare innovation and policy.”

Source: Vicki Durston/LinkedIn