People Power series: Power dynamics and power reorientation towards individuals with lived experience – Paul T Conway, USA

Paul was diagnosed with kidney disease at the age of 16, after a random urine test during a high-school sports physical examination. This was a blow for Paul who had wanted to join the military, which was a family tradition. Instead, his father encouraged him to serve his country another way through a career in politics and government.

Paul lived for 13 years with chronic kidney disease before suffering kidney failure and undergoing dialysis. At the time, he was working as the Deputy Secretary for Health in Virginia. He spent 3 years on dialysis, during which he never missed a day of work, before receiving a kidney transplant in 1997.

Paul is passionate about amplifying the voices of those with lived experience, advocating for their experience and unique insights to be treated as evidence. He pursues this through his volunteer work for The American Association of Kidney Patients, and through service on a number of patient advisory boards, including one for the US Food and Drug Administration. In 2018, Paul was invited to speak at the UN Convention on Ageing, Ethics and Disease. While on a panel with a number of leading health professionals, he was shocked by the discriminatory and disempowering perspectives shared about people living with NCDs.

Paul’s experience with kidney disease and kidney failure in the USA shows how shifting power dynamics towards the voices of his peers not only elevated the value of the lived experience but also resulted in policy changes at the highest levels of government.

This article is an excerpt from the publication ‘People power - Perspectives from individuals with lived experience of noncommunicable diseases, mental health conditions and neurological conditions’, which includes six detailed case studies from 12 individuals with lived experience of diverse health conditions.

The case studies were developed using participatory research through focus groups with people with lived experience of NCDs, mental health conditions and neurological conditions.