Category Archives: Patient Engagement

Good Reminder

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If you are interacting with patients, here is something important you might want to remember.

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.

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.

Home Monitoring Technologies Forum

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Are you interested in home (personal) health monitoring technologies and ways they can be used to improve patient care in Alberta? If so, here is an event you may find of interest.

Click here to read and download the forum information.

Developing an Osteoarthritis Tool for Patients – Get Involved

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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.

Another Chance

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BedMed Study Opportunity – Get Involved

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“Did you know that the time of day when you take your blood pressure medication might be important? The University of Alberta is leading BedMed, a Canada-wide blood pressure study, to answer important questions on treatment for high blood pressure. With your help, we can find out.” (Bedmed Facebook Page.)

Who Needs to be Transparent?

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There is much discussion around the need for transparency in the healthcare sector, with patient advocacy groups being a strong voice in this discussion. However, what about their own transparency?

“Pharmaceutical companies gave at least $116 million to patient advocacy groups in a single year, reveals a new database logging 12,000 donations from large publicly traded drugmakers to such organizations….

The database, called “Pre$cription for Power,” shows that donations to patient advocacy groups tallied for 2015 — the most recent full year in which documents required by the Internal Revenue Service were available — dwarfed the total amount the companies spent on federal lobbying. The 14 companies that contributed $116 million to patient advocacy groups reported only about $63 million in lobbying activities that same year.

Click here to read the full article.