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July 2014
'Healthy privilege' - when you can't imagine being sick
Jul 24, 2014 10:24 AM

As the number of ehealth applications rises, there appears to be a growing divide between who developers think are using their products ('healthy, fit, not-sick!'), and actual patients. Although their designs help to manage patients' increasingly complex health needs, new applications are used by the 'worried well' - people who can easily learn the technology, who are free from pain and who can consistently track symptoms - versus actual sick people.

This is referred to as 'healthy privilege.' Illness is often invisible and affects people in unexpected ways, so it's often difficult to really 'get' what being sick is all about. This article offers insight into the value that the experiences of patients and caregivers can provide to the future of ehealth solutions.

Read the article

ALL, Digital health and patients  
June 2014

A young caregiver shares her voice
Jun 25, 2014 11:42 AM

This year Sara Shearkhani's husband was diagnosed with cancer and she became his caregiver. Over 2.5 million Canadians are caring for a chronically ill or disabled loved one, and still caregivers are overlooked and their insight underestimated. Sara bravely shared her feelings about the marginalization of caregivers in an article published by The Globe and Mail and proved that we have much to learn from the experiences of caregivers.

We believe that caregivers are the unsung partners in a patient's health team. Rather than standing outside of a patient's journey, they are part of it, and they have a unique and valuable perspective.

Read Sara's article, "Caring for my sick husband I am going through untold suffering."

ALL, Stories about caregiver experiences  

Review: The Secret Language of Doctors, by Dr. Brian Goldman
Jun 11, 2014 11:17 AM

Most of our workplaces and professions have their own language and slang that enable us to communicate quickly and provide us with insider status. Doctors are no exception.

The Secret Language of Doctors by Dr. Brian Goldman, host of CBC Radio's White Coat, Black Art, does more than offer an insider's list of medical slang, it offers a candid look at the attitudes and issues that shape our healthcare system, particularly within hospitals. Dr. Goldman describes "a quiet seething..., a simmering frustration felt by doctors about their work, their patients and each other." And slang is one way this bubbles to the surface.

Some of the terms and attitudes about certain types of patients are both offensive and disturbing. It is hard not to be angry and put off by them, but then, these are attitudes regrettably found throughout many cultures; we are often not kind to the old, the mentally ill, the obese.

We have an acute care-focused system that is dealing primarily with the needs of those with multiple chronic conditions. This is a big shift, and our health policies and institutions including health education are only beginning to adjust.

Dr. Goldman provides the systemic context that shows how doctors are not well prepared for today's healthcare world. Traditional medical education is not enough. Doctors and other healthcare workers receive little to no training or support in handling the emotional, essentially human side. They are faced with patient anxiety, or worse, dealing with patients and families in extreme distress, with little preparation.

This book is worth reading for two reasons: on a personal level, you may better understand your situation and the choices you have if you can decode what you hear as a patient or family caregiver, and for those of us interested in seeing the healthcare system become more patient-centred, this book provides an opportunity to understand the challenges faced by our doctors.

Thanks to Alies Maybee, Patients Canada Adviser, for her review and thoughtful comments.

ALL, About the healthcare system  
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