Bill Wang
Hong Kong
As a retired lawyer and lived experience expert who has navigated autosomal dominant polycystic kidney disease (ADPKD), dialysis, and a combined liver-kidney transplant, the most defining aspect for me was the dual battle: against kidney disease and a system that marginalized lived experience expertise.
My diagnostic journey was marked by systemic “blindness,” where critical genetic information was overlooked. The greatest everyday barrier was a system not designed around what matters most to patients, such as quality of life and life participation. To preserve my legal career, I had to defy standard dialysis blood access recommendations — a choice that granted dignity, but came with personal risk and exposed the “therapeutic rigidity” of our systems.
Through my various roles, including immediate past chair of the ISN Patient Liaison Advisory Group, vice chair of the Hong Kong Kidney Foundation, member of the World Kidney Day Joint Steering Committee, and board member of PKD International, my mission is to transform this paradigm. I channel my experience into initiatives with the ISN, KDIGO, SONG, and CanSOLVE, co-designing tools like the SONG-LP life participation measure and authoring publications that frame lived experience as essential expertise that is undervalued.
I have been advocating for moving beyond tokenism and for capacity building for lived experience experts like us, measured by key performance indicators on funding, logistical support, and genuine co-production. I believe deeply that this is the strategic imperative for true patient partnership.