Patient Advisory Group

Amanda Dominello

Amanda Dominello is a living kidney donor and primary carer of an adolescent with chronic kidney disease. She is a passionate advocate for improved support and systems for people with kidney disease and their carers and for equity in the availability and accessibility of resources and services.

Amanda is a consumer representative at the Centre for Kidney Research at The Children’s Hospital Westmead and is involved in research projects that address the treatment and care of people with kidney disease.

 

Helen McLennan

Helen is a Research Assistant and Patient Engagement Officer.

Helen is enthusiastic about working as a Patient Engagement Office and Research Assistant with the wonderful team at Centre for Kidney Research. The team focus on patient-identified priorities in order to improve the lives of people living with chronic kidney disease.

Helen is grateful to have received a kidney transplant in 2011 after some time on Peritoneal Dialysis which was preceded by a slow decline in her kidney health.

Helen lives in regional NSW and is very aware of the travelling involved in accessing kidney care and the subsequent burden on finances, family, carers and ones’ own stamina, and particularly the need for more information and support. Helen is optimistic that with patient involvement many issues experienced by patients and their carers can be addressed.

Chandana Guha

Chandana Guha is a consumer partner and Ph.D. candidate with the Sydney School of Public Health, University of Sydney.  As a caregiver of her daughter diagnosed with childhood chronic kidney disease, Chandana is passionate about research that translates into policy and practice to address the needs and priorities of consumers.

Chandana’s key research interests include patient-reported outcomes, shared decision-making, and patient-centered care.

Chandana’s Ph.D. thesis is embedded in programs of work that integrate lived experiences in developing interventions for children and the elderly with chronic kidney disease to improve outcomes.

Nicole Scholes-Robertson

Dr Nicole Scholes-Robertson, BAppSci (Physiotherapy), PhD is a physiotherapist with lived experience of dialysis and transplantation. She is a post-doctoral researcher at The University of Sydney and a Patient Partner at the Centre for Kidney Research. Her interests include rural patient access to kidney replacement therapy and consumer/patient involvement in research. She is Co-Chair of the BEAT-CKD Consumer Advisory Board, consumer member of the Australasian Kidney Trials network (AKTN) scientific committee, member of the consumer guideline writing group with CARI Guidelines and is on the SONG-GN Steering Committee. Nicki is also the Consumer Editor for Cochrane Kidney and Transplant. She is a skilled trainer with extensive experience designing and conducting workshops on patient involvement in research with clinicians, researchers, and patients.

As a person with CKD, I don’t want to be a passive observer in my journey with kidney disease. Involvement in research encourages active participation in our disease and furthers everyone’s knowledge. Through CRE-PACT we are able to ensure that more consumers are able to be involved, and researchers and clinicians are trained and equipped to facilitate this.

Shyamsundar Muthuramalingam

Shyam has a PhD in chemistry and is a renal transplant recipient with lived experience of Haemodialysis (HD) and kidney disease.

Shyam discovered a passion for consumer advocacy, community engagement, and research implementation as a person with lived experience and research training and is now a leader in developing, implementing, and evaluating consumer and community engagement strategies across a range of policy-setting bodies including Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health and Medical Research Institute (SAHMRI), The George Institute for Global Health and Kidney Health Australia (KHA). Shyam represents the community voice as a consumer member of the National Clinical Advisory Committee at KHA and the Australian Medical Council, appointed by the directors to represent the community voice in the accreditation of medical degrees by Australian Universities.

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