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Blog Rachel Martens: Advocacy & Social Media

Rachel Martens: Advocacy & Social Media

Rachel Martens is a mother, parent engagement facilitator, patient research advocate & social media pioneer in Calgary, Alberta. We discuss how social media helped her learn to care for her son’s rare disease, and later became her voice to advocate for others.
Coffee And Research (blog) Finding Community: Social Media for Families of Children with Disabilities (webinar) Raeofsunshine79 (twitter)

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nickdawsonNick Dawson@nickdawson·
4h

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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PatientCriticalPatient Critical Co-op@PatientCritical·
3h

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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PatientCriticalPatient Critical Co-op@PatientCritical·
7 Dec

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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fredtrotterfredtrotter@fredtrotter·
3h

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

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PatientCriticalPatient Critical Co-op@PatientCritical·
3h

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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PatientCriticalPatient Critical Co-op@PatientCritical·
3h

cc @vmontori @s4pm @patientrev @MichaelMarmot

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RachbcooperRachel Cooper@Rachbcooper·
3h

@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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majidumaUmair Majid@majiduma·
4h

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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MowatCentreMowat 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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PatientCriticalPatient Critical Co-op@PatientCritical·
20h

“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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PatientCriticalPatient Critical Co-op@PatientCritical·
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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PatientCriticalPatient Critical Co-op@PatientCritical·
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

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PatientCriticalPatient Critical Co-op@PatientCritical·
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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PatientCriticalPatient Critical Co-op@PatientCritical·
7 Dec

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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SolidFootingJulie Drury@SolidFooting·
7 Dec

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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OTNtelemedicineOTN@OTNtelemedicine·
7 Dec

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

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PatientCriticalPatient Critical Co-op@PatientCritical·
7 Dec

We need to elevate beyond #manel status, but othereise this discussion intersects almost all the right ways.

#digitalhealth #patientsaspartners #continuouscare

Next: to discuss scaling for masses & escape the reverse-ghettos that are sites of excellence. #sdoh #TopOfMind2019

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kellygrant1Kelly Grant@kellygrant1·
6 Dec

A lovely profile of @NavPersaud, a Toronto scientist, family doc and crusader for safe and affordable medicines, by @theresaboyle https://t.co/Jmn7H46zkF

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PatientCriticalPatient Critical Co-op@PatientCritical·
30 Nov

People hoard meds -people die- because they can't afford what they need...here in Canada, not the US.

And it could get worse.

"Pharma in Canada-Running Out The Clock?"

What's happening could affect R&D & the price of medicine in Canada for decades: https://t.co/wc05wv46Pi

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walidgelladWalid Gellad@walidgellad·
6 Dec

Instead of developing 25-50 innovative new drug products for $50 billion, the drug industry instead bought back shares. https://t.co/qeT9VRxRtf

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Patient Critical Co-op 2017
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New Podcast!

“Partnering with Patients isn’t a nice thing to do, it’s the Critical thing to do!“
Julie Drury is a caregiver, patient advocate, bereaved mom, inaugural chair of the Ontario Minister’s Patient and Family Advisory Council, speaker & runner. Julie occupies a unique intersection of patient and policymaking & shared her insights with us.

LISTEN HERE

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