PRMs Collaborative Conversation Series - Shyamsundar Muthuramalingam

Shyamsundar Muthuramalingam

Shyam­sun­dar Muthu­ra­ma­lingam
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.”

Con­tact Shyamsundar

View oth­er pro­files in the PRMs Col­lab­o­ra­tive Con­ver­sa­tion Series.