Patient Critical Co-op

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@baldgrrl @majiduma @PatientCritical @ginettafammed @MaggieKeresteci I don’t feel there are any boundaries to where patients can/should be engaged. Limitations are related to leadership, culture, design, informed and meaningful.

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Nick Dawson @nickdawson·

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I’ve been thinking about a GitHub model for medical records. What if patients owned them and granted “contribute” rights to providers for pull requests. Then contributions could be reviewed and accepted. You could even have forking - eg for research. https://t.co/MtWzQgVQha

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Include patients and clinicians and policy makers and providers....you need everybody involved.
You need everybody at the table to make informed decisions, avoid waste & burnout & save lives!

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People hoard meds -some die- because they can't afford what they need-both in the US AND here in Canada...& it could get worse.

Before February 2019 the future of R&D & the drug prices in Canada could be decided:

https://t.co/wc05wv46Pi

@theresaboyle @picardonhealth @KCroweCBC

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fredtrotter @fredtrotter·

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NHS whistleblower cannot afford to continue whistleblowing. https://t.co/lE7I9qjhkf

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This is key. #patientinclusion is only meaningful when not tokenistic but actually considers & works with #patientsaspartners

#nothingaboutuswithoutus shouldn’t be considered an unfair demand but a promise to help

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cc @vmontori @s4pm @patientrev @MichaelMarmot

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Rachel Cooper @Rachbcooper·

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@majiduma @anthonymccann Further unrefined thoughts on your question:
What's the rationale for consulting rather than collaborating or partnering? Whose interests are being prioritized?
What existing parameters regarding the task/process are fixed and unchangeable?

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Umair Majid @majiduma·

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Q for #patientengagement friends: there is an understanding that pts shouldn't be involved in the same way in all activities (sometimes consult, other times partner). Is there an example of an activity where consultation would be more useful than collaborating or partnering?

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Mowat Centre @MowatCentre·

6 Dec

Those online Terms of Service we all agree too without really reading them? Mowat's @nerd_sighted decided to actually read them. Here's what she learned about what we're giving up in them in terms of #digitalprivacy and legal rights: https://t.co/HMGSdiLcl7 #personaldata

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10 Dec

“There are currently more than 1,690 medications listed in "actual shortage" status on Drug Shortages Canada, the federal government's official tracking website” #pharma #pharmacare https://t.co/pmwGw3uJoT

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9 Dec

"The very habits that apps seek to cultivate have the potential to become self-destructive. ...But what makes some apps useful and others useless? And how much of that has to do with the app...& how it is used?"
https://t.co/imC2RodHOw

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8 Dec

Patient Critical Co-op is here to keep healthcare healthy--for when YOU need it:

Hear from patients, clinicians, industry & polic leaders on the Patient Critical podcast: https://t.co/vmeJwjQiOe

Resources you can trust:
https://t.co/2cSKsgORof

Join us!
https://t.co/ideRaEV9LN

2

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8 Dec

2017 @cmaj article exploring price negotiating power & cost savings of national #pharmacare:

"expenditure on prescription drugs in Canada would fall by $3.04 BILLION (range $743 million to $5.46 billion; 12% reduction)"

https://t.co/XGQ6y1niNJ @SteveUBC @navpersaud #openpharma

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People hoard meds -some die- because they can't afford what they need-both in the US AND here in Canada...& it could get worse.

Before February 2019 the future of R&D & the drug prices in Canada could be decided:

https://t.co/wc05wv46Pi

@theresaboyle @picardonhealth @KCroweCBC

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Julie Drury @SolidFooting·

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Beyond 'looping us in', make us partners in our care. Be open and transparent. Hear and understand our challenges. Recognize us as experts in our own health, care, disease, personal situation. #patientsafety https://t.co/OWtksDoeDT

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OTN @OTNtelemedicine·

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ICYMI @DrEdMBrown joined the @PatientCritical podcast to talk about #digitalhealth in Ontario - from medical #eVisits to #mentalhealth to #telestroke. Listen now -> https://t.co/eeTE1qU0B1 @TheHSF @BigWhiteWall1