Tag Archives: patient voice

Who are the Experts?

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With so much emphasis in the healthcare field on experts and expertise, here’s a tweet and its responses that look at this question. The next time you were asked who the health expert is, what will your response be?

Volunteer Week

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National Volunteer Week is April 7-13, 2019! This week provides an opportunity to recognize the important role that volunteers play. Alberta Health Services is recognizing its over 14,400 volunteers. One of these individuals is also a member of our Pts4Chg community. Thanks for all you do, Gloria.

#EndPJParalysis On the Air

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Paul, a member of our Patients for Change community, was recently on CBC’s “The Homestretch.” The focus of the discussion was #EndPJParalysis initiative. To learn what this initiative entails and the exciting results it is garnering, give Paul’s conversation a listen.

Saskatoon -A must see

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If you live in Saskatoon or area, this is something you will want to check out. Atlthough this true event is incredibly sad, Greg’s Story has the potential of bringing about some positive changes to healthcare. In doing so, the hope is to see fewer people falling through the cracks.

Click here for more information and to register.

Tweet Worth Sharing

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Every so often, a tweet is encountered that is too good, and indeed too true, not to share. Given how quickly the number of retweets is increasing, other people feel the same way. With any luck, some of the people doing the retweeting are physicians.

Get Involved and Add Your Voice

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The Neurosciences, Rehabilitation, and Vision Strategic Clinical Network (NRV SCN) is looking for patient and family representatives to respond to their patient engagement survey.

  • The scope of this new SCN includes:
      • neurological disorders (including Parkinson’s disease, Multiple Sclerosis (MS), epilepsy, dementia and Alzheimer’s disease), neuromuscular disorders (including spinal cord injury and Amyotrophic Lateral Sclerosis (ALS, or more commonly, Lou Gehrig’s disease)), and brain injuries;
      • all forms of physical rehabilitation (which may include working with a physiotherapist, occupational therapist, speech pathologist, respiratory therapist, recreation therapist, audiologist, chiropractor, or other rehabilitation specialist); and
      • all eye disorders (including cataract, glaucoma, macular degeneration, diabetic vision loss and other eye disorders).
  • The combined results received from this survey will be reviewed by the NRV SCN Leadership Team, presented at an upcoming Core Committee meeting and used to help inform the priorities of this new SCN.
  • If these clinical areas are applicable to you as a patient and family advisor, we invite you to complete this survey, or share the survey link and attached poster with others who may be interested in providing input.
  • The survey is open from December 21st, 2018 until January 21st, 2019 and should take from 10-15 minutes to complete. It can be found here.

What? Listen to Patients?

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The importance of the patient is becoming more recognized in the healthcare sector. However, in many instances, including the pharmaceutical area, the patient is seen as simply something to talk to or to talk about.

According to a recent blog post by Mike Rea, this stance is limited and limiting in terms of who patients are and what they have to offer. As he asks in his post.

But, instead of talking to patients, what if we started listening? Not just to what they ‘need’, but what else they want? There are so many incredible groups out there now – potent patient groups (MMRF, MDA, Savvy Patients and more), who want to talk to us, who want to share. But, start to listen, and there will be a hundred hands that go up to stop you doing that.

Click here to read the full article.