Sharing the Patient Experience with the Media . . .

In line with becoming a Chronic Illness Ambassador, advocating on behalf of other patients with chronic illnesses, I volunteer at Kingston General Hospital as a Patient Experience Advisor. Patient Experience Advisors are patients and care-givers of patients who sit on different committees within the hospital, sit in on hiring interviews, and who have their own committees in order to discuss how aspects of the hospital are run. The goal of KGH is to have Patient Experience Advisors participating in all hospital committees and contributing to all decisions that affect patients. KGH has over 150 Patient Experience Advisors to date.

I was asked to join this group because of my extensive experience in the medical system. I’ve lived with Chronic Kidney Disease since I was 18. I’ve lived with Heart Disease for years too. With relation to kidney disease I’ve done every possible modality of dialysis, had a transplant and had numerous medical procedures. My experience with Heart Disease has given me extensive medical experience too. I also have had a chance to receive care at several different hospitals. Needless to say when it comes to sharing my opinions and observations about the medical system I have a lot to say.

Last week I participated in a meeting at KGH with Dr. Brian Goldman from CBC’s White Coat, Black Art. It was Dr. Goldman and a group of the hospital Patient Experience Advisors. Not sure what to expect, I envisioned a lecture where Dr. Goldman would talk to us about his radio show or his medical practice but boy I was wrong . . .


KGH had okayed a full-on exposé . . . Dr. Goldman and a room of Patient Experience Advisors pouring out their souls. The doctor asked us to share the best and the worst of our experiences and did we ever give it to him!! With recorder and microphone in hand he went from advisor to advisor documenting our stories.

I was moved to hear the range of experiences in the room. I meet with these people monthly but now I was hearing their personal medical experiences. As they spoke I better understood why these people cared enough to attend meetings, to read through proposed protocol and to weigh in with their heart-felt thoughts. In every advisor were powerful reasons to care.

I felt proud to be part of this brave group – people who cared enough to talk about their difficult medical experiences.

I also felt proud of Kingston General Hospital for so openly allowing Dr. Goldman to share their patient’s experiences both positive and less favourable. After Dr. Goldman spoke to our group he spoke to a group of the hospital’s physicians to hear about their experiences with us and how things have changed since Patient Experience Advisors appeared on the hospital landscape.

I’ve been informed that Dr. Goldman will present our Patient Experience Advisor story in a conference this spring. And our story will be shared in an up-coming radio segment on White Coat, Black Arts. I’ll be sure to share as soon as there’s something to share.

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