Get Involved and Add Your Voice

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.

Time for a Heart to Heart?


Do you reside in Calgary or area?
Do you or someone you care for have a cardiovascular/pulmonary condition?
Would you like to participate in a study focus group?

If you said “Yes” to the above, click here for more details.

What? Listen to Patients?

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.

Developing an Osteoarthritis Tool for Patients – Get Involved


The College of Family Physicians of Canada and the Centre for Effective Practice, in partnership with the Arthritis Alliance of Canada (AAC), developed the Osteoarthritis (OA) Tool A that helps family physicians work with patients who have suspected, new or established osteoarthritis of the hands, knees and/or hips. Related to this family physician tool, a new working group of the AAC is developing a patient version. To find out more about this patient tool and how you can get involved in its development, click here.

This Just Out!

Registration for Quality Summit 2018 will begin on June 27th, 2018 at 10:00 a.m. MT. Given the popularity of this event and the limited spots available, you will want to register as quickly as possible. Click here to find out more.

Become a Patient Advocate

    Do you reside in the Edmonton area?
    Are you a caring, empathetic, compassionate individual who is looking for a way to make a difference in the lives of others?

If your answer to the above questions is “Yes,” the Open Arms Patient Advocacy society is looking for you. Click here to read more about this exciting opportunity.

Get Involved – Health Research Opportunity

Do you reside in Alberta? Are you interested in health research and patient engagement? If you answered “Yes” to both questions, you may wish to visit the Patient/Family Registry web page. In addition to discovering what is happening in the world of health research in Alberta, you can fill out an application form to get involved!

What You Doing on Thursday – Nov 29th?

Thursday, November 30 – Patient Engagement Speaker Series
Helle Tees & Nicole Olivier will be presenting on patient engagement. If you are unable to attend this event in person, you can join the webinar. Click here for more information and to register.