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isabel jordan
41 followers -
Parent. Rare Disease/ePatient Advocate. Skeptic. Nerd.
Parent. Rare Disease/ePatient Advocate. Skeptic. Nerd.

41 followers
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Patient Engagement: You’re Doing it Wrong
Buckle up kiddos. This may be a bumpy ride. Generally on
here, I try to share stories of how to do things right. Show leadership by
example. Model change, if you will. And I’ve tried to let this one go. Let it
slide. Chalk it up to experience. But, my frien...
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Open Access Science for Quality of Life and Partnership in Care
It's been a while since I've posted - too busy, too preoccupied, too everything. Happily, Jon Tennant ( @Protohedgehog ) alerted me to a neat contest the Open Access science people were having as part of OpenCon2017 . The idea was to, in less than 750 words...
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Kindness shouldn't be blue sky thinking
Kindness shouldn't be blue sky thinking "I don't have any help today". The technician looked annoyed. I wasn't sure she was talking to us, initially. Frankly, it was an odd thing to say out of the blue after calling us into the room. I looked around, to see...
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Rare Disease Research – moving from Study Participant to Research Partner
On February 28th I'm honoured to be hosting a special Rare Disease Day #hcldrtweetchat . Two weeks ago Joe Babiain approached me to see if I would be
interested in working something up with a rare disease focus coming up towards
rare disease day. To be hone...
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Patient Centred Care - It Begins with Respect
Patient
Experience. Empathy. Patient Engagement. Patient Inclusion. Shared Decision
Making. I hear a
lot of buzzwords. And a lot of the time, that’s all they are – buzzwords. I’ll
tell you what I want, not as a ‘e-patient’ or a ‘patient advocate’, but just ...
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**
You were supposed to be the easy one - my typical child, running around with your friends, the world your oyster, the usual bumps and bruises of childhood. Sure there were those scares of your toddler and pre-school years, but we got past them and decided t...
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A Wish Fulfilled
It
was the most perfect of days - sunny, a light ocean breeze and smooth
sailing ahead. A lot had to come together to make the day happen, and it
was perfect that the weather cooperated to put the finishing touches on
the day. Making Zach's Wish come tr...
A Wish Fulfilled
A Wish Fulfilled
modelingchange.blogspot.com
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A Wish Fulfilled
It
was the most perfect of days - sunny, a light ocean breeze and smooth
sailing ahead. A lot had to come together to make the day happen, and it
was perfect that the weather cooperated to put the finishing touches on
the day. Making Zach's Wish come tr...
A Wish Fulfilled
A Wish Fulfilled
modelingchange.blogspot.com
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A Health Care Orchestra
I stand in front of a virtual orchestra. My musicians are
doctors, nurses, occupational therapists, paediatric dentists,
physiotherapists, office assistants, booking clerks, and health technicians.   The orchestra has also included Speech and
Language Patho...
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My plea to the attendees of the #hcsmca National Symposium: Patients are more than our stories
#PatientsIncluded – Once more with feeling… I am more than my story. This is something that I know and
the strength of my participation in #PatientsIncluded conferences. However, too
often, when patients and caregivers are included in conferences, they are
...
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