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Tag Archives: patient advocacy

Patient Critical: A Non-profit for the Patient Voice

by Dr. Robin McGee, CKN Editor, Survivor, Advocate

 

 

A car accident changed PJ Mierau’s life.   When their car was forcefully rear-ended, his wife suffered significant traumatic brain injury.  A fit active physiotherapist, she was left with crippling difficulties with energy, memory, and concentration.  She could not work.  The couple were catapulted into the labyrinth of poor healthcare:  denied insurance claims, conflicting opinions, avoidant doctors, and sloppy records.

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Psychosocial Care Meets Advocacy: The Therapeutic Practices for Distress Management Project

DeborahMcLeod

Dr. Deborah McLeod

by Dr. Robin McGee, CKN Editor

 

Recently, I joined the Canadian Association of Psychosocial Oncology or CAPO.    Any patient can join as an affiliate member.  I have a special interest in this topic, for when I am not being a crusading cancer patient advocate, I am a clinical psychologist.  As a survivor and clinician, I am keen to see improvements in how care is delivered for cancer-related distress.

 

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Is Telling Your Story Advocacy? The example of Fight CRC

RobinMcGeeby Dr. Robin McGee, CKN Editor

 

Throughout the cancer world, there are many opportunities for the individual patient or caregiver to get involved in advocacy.   But how does one find them?   How does one get started?  One of the functions of this blog is to inform patients about such opportunities to bring about system-wide improvement.

 

Fight CRC is an organization devoted to fighting colorectal cancer.  Being a CRC survivor, I am passionate about prevention and early detection.   I interviewed Emily Piekut, Advocacy Manager at Fight CRC, to learn about how that organization invites individuals to strive for change.  Her answers reveal a thoughtful and committed organizational framework that makes those first steps towards advocacy both simple and powerful.

 

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Introducing Remarkable Cancer Patient Advocate: Deb Maskens, MSM

Deb Maskens

Deb Maskens

by Dr. Robin McGee, CKN Patient Advocacy Editor

 

One of the best ways to promote patient advocacy is to profile those who are in the trenches.  To this end, I will be writing a series of interviews with champions and exemplars of patient engagement.  What a privilege and a pleasure to share these stories!  Many have shone their light before us, to light our path forward.

 

Deborah Maskens is the ultimate patient advocate.  The co-founder of Kidney Cancer Canada and CanCertainty, she is Canada’s leading patient voice for equitable drug funding.

 

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An Advocate for the Previvor Community: Introducing Georgia Hurst

GeorgiaHurst

Georgia Hurst

by Dr. Robin McGee, CKN Patient Advocacy Editor

 

Georgia Hurst had a life before advocacy. She was a fit, active mother, putting the finishing touches on her Master’s thesis in Post-War II American History at Northwestern when she learned her brother had been diagnosed with colon cancer at 48.  Several years before, they lost an older brother to colon cancer at 36.  This early-onset pattern prompted healthcare providers to suggest she be tested for Lynch syndrome (Ls), an autosomal dominant genetic condition which strongly predisposes one to endometrial and colorectal cancer, and various other cancers.  She tested positive, and her world changed.

 

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When Patient Engagers meet Patient Advocates: The 5 Levels of Public Participation

RobinMcGeeby Dr. Robin McGee, CKN Patient Advocacy Editor

 

Patients and families wonder how to get involved in advocacy.   We want to help solve the problems we may have encountered on our cancer journeys, or share our aspirations for better care.  We want to give back to the system, but we are not sure where to start.  We do not know what degree of involvement with the system is welcome or appropriate.

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