Consumer Engagement Officer
Affiliation: Australia and New Zealand Dialysis Transplant Registry, South Australian Health & Medical Research Institute (SAHMRI)
Shyam is a Consumer Engagement Officer at Australia and New Zealand Dialysis Transplant Registry (ANZDATA). Shyam has a lived experience of kidney disease, is a transplant recipient and coordinates the National Kidney consumer research network (“The Network”). He devotes his time and effort to advancing consumer participation in kidney disease research and educating researchers on how to engage consumers more effectively in their research by addressing patient priorities.
Q&A with Shyamsundar
What interested you about patient reported measures research and/or projects?
“As the survival of patients with chronic kidney disease improves, there is a need to shift from clinical and biomedical “hard metrics” as primary indicators of healthcare quality toward gathering consumer feedback from patients on aspects of their experience consistent with their values, including health, well-being, respect and dignity, quality of life (QoL) and independence. Being a patient with lived experience of kidney disease and a researcher positions me in a niche situation not to only implement patient perspectives and priorities but also to help researchers co-design patient-reported measures in the area of kidney research and care.”
What is your biggest achievement in relation to patient reported measures research, or the application of research into practice?
“Being a consumer co-investigator for the project, “Measuring Needle Fear (MNF)– a consumer codesign of a new PROM for identifying fear of dialysis needles in chronic kidney disease” is one of the biggest achievements in the area of PROMS. MNF is a condition-specific patient outcome measure that, will identify patients at risk of needle fear and allow us to offer programs and strategies to patients to help them manage their needle fear. This project was led by Associate Prof Shilpa Jesudason from Central Northern Adelaide Renal Transplantation Service (CNARTS) Clinical Research Group and co-designed by a multidisciplinary team of nephrologists, dialysis nurses, psychologists, and researchers and underpinned by consumer voices with the integration of patient needs at all levels of the project.”
How do you approach collaboration with consumers, carers and community? Or how do think we can work together to keep making advancements in this space?
“Prior to setting the research question or the indicator to measure, it is paramount to do a consumer and community consultation. This will greatly aid not only in avoiding research waste but get improved buy-in from consumers as the research is relevant to them.”
View other profiles in the PRMs Collaborative Conversation Series.