Tag Archives: patient voice

Turning up the volume on the ‘patient voice’

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speaker-icon-volume-psd-facelftWhen discussing topics relating to health care, the term “patient voice” is commonly used. However, what does it really mean? What is the difference between patient voice and patient engagement? Is the patient voice important? If so, why is it important and to whom is it important?

In a recent blog post found on the Association of Medical Research Charities’ website, Dr. Andrew Clempson and Melody Eaton state the following:

The patient voice is incredibly important for many of our members. We know it helps drive policy areas, and we also know that it is used widely in research – from setting strategies to informing peer review of research and helping with recruitment for studies. But the term ‘patient voice’ isn’t always clearly defined or well understood.

Click here to read the full blog post.

What Will You Do?

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“Patient organisations in Canada have engaged in Rare Disease Day since its first year in 2008, arranging gala dinners and exchanges between researchers and patients, as well as regional events across Canada.

The undisputed highlight of the 2015 event was the transformation of the iconic CN Tower with blue lighting to celebrate Rare Disease Day, as was done in 2014 as well. Elsewhere in Canada local communities got together for bake sales, dinners, and research forums.

The Canadian National Alliance, the Canadian Organization for Rare Disorders (CORD), serves as the voice for the estimated 1 in 12 Canadians affected by a rare disease. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder.”  http://www.rarediseaseday.org/country/ca/canadae-disease-day)

The following pictures are of Melanie, an individual who suffers from the rare disease – gastroparesis.
(Pictures were submitted by DRDD2016eborah, February 28, 2016.)

 

As Melanie’s mother, Deborah, states, “That’s whatRDD20161 I have to look forward to every month for three days.”

Is Patient Engagement Tokenism?

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Patient engagement is a term that is commonly used in the healthcare sector. However, what does patient engagement mean? Does patient engagement mean sitting on a committee and doing nothing more than rubber stamping decisions that were made elsewhere? Is patient engagement mere tokenism?  If not, what is patient engagement and how is it promoted, facilitated and supported?

In the article, “Beyond tokenism: How hospitals are getting more out of patient engagement,” Wendy Glauser, Michelle Satsiuk and Debra Bournes explore these and other ideas.

Parents of boy with autism oppose plan to move him

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The parents of Toby McKeon, a 12-year-old youth, are frightened that they will be losing him for the second time.  At present, Toby is in the custody of the Children’s Aid Society of Peel Region and currently lives at a facility in Mississauga.  However, due to contracting changes, Toby is scheduled to move to a care home in Stratford.  Toby’s parents are seeking ways to keep their son in the Peel region.  According to David McKeon, Toby’s father, “”To move to Stratford is crushing us, and will crush him.”  Read the full story here.

First Physician Assisted Death

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According to a spokesperson for the authority that oversees health care in the Quebec City region, a Quebec City patient is the first to die legally of physician assisted death. However, given the lack of transparency and the privacy issues involved, other physician assisted deaths may have occurred since the Dying with Dignity law was passed on December 10, 2015.