Why did they volunteer to be consumer advisors?
Rafaella wanted to address the gaps experienced as an endometriosis patient.
“I noticed a lack of patient-focused resources, with many unexplained medical terminologies that not everyone understands,” Rafaella said.
“It can be a system that’s hard to navigate, with research in areas that don’t benefit a majority of patients and taboo subjects like painful sex that aren’t spoken about.”
Helen wanted to help future patients, their carers and families.
“Research is key to breakthroughs in how we diagnose, treat and manage health conditions,” Helen said.
“As a patient, I have interacted with healthcare services throughout my life and I felt becoming a consumer advisor was a way for me to give back.”
What does a consumer advisor do?
Partnering with Epworth, consumer advisors are patients, family members or members of the community who help improve the patient experience and quality and safety of care.
“As a member of the centre research committee, I try to consider whether the research being proposed would have made a difference to me as a person living with endometriosis,” Helen said. “I also think about whether others with the condition could benefit from the research.”
“If we don’t design research with patients and consumers in mind, then who are we researching for?” - Helen
So far, Raffaela’s highlights include providing feedback on research funding proposals and suggesting areas from a patient’s perspective that have a greater need for research.
For Helen, it’s important a patient’s perspective is sought and valued.
“Meaningful engagement is more than just having a seat at the table,” Helen said.
“It means encouragement to speak to contribute a point of view. It also requires the creation of a safe environment where I feel comfortable to give my point of view.”
Want to learn more about research at the Julia Argyrou Endometriosis Centre at Epworth, or the Consumer Advisor program at Epworth? We would love to hear from you:
- What is endometriosis
- What causes endometriosis
- What are the symptoms
- What are the risk factors
- Myths surrounding endometriosis
- Epworth Endometriosis Patient Guide