Patient Critical Co-op

Giving Patients a Voice Navigation
  • About
    • Contact
    • Blog
    • Founder’s Message
    • Meeting Briefs
    • Privacy Policy
  • Directory
  • Podcast
    • iTunes
    • Google Play
    • RSS Feed
  • Resources
    • Submit Online Resources
  • Members
    • Log In
    • Activity
    • Profile
    • Notifications
    • Groups
    • Settings
    • Log Out
  • About
    • Contact
    • Blog
    • Founder’s Message
    • Meeting Briefs
    • Privacy Policy
  • Directory
  • Podcast
    • iTunes
    • Google Play
    • RSS Feed
  • Resources
    • Submit Online Resources
  • Members
    • Log In
    • Activity
    • Profile
    • Notifications
    • Groups
    • Settings
    • Log Out
Podcast Rachel Martens: Advocacy & Social Media

Rachel Martens: Advocacy & Social Media

March 15, 2018

Download file | Play in new window | Duration: 44:02

Rachel Martens is a mother, parent engagement facilitator, patient research advocate & social media pioneer in Calgary, Alberta. 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) Twitter: @Raeofsunshine79

youtubewatch
 
podcast
view resource knowledgebase
view resource knowledgebase
become a member

Retweet on TwitterPatient Critical Co-op Retweeted
Kapur_AKDr. Atul Kapur@Kapur_AK·
12 Dec

How'd that work out? "the biggest non-party spender in the run-up to the election campaign was @OntariosDoctors. The doctors' negotiating body spent a total of $596,652 in the campaign & pre-campaign period. The OMA spent about $248k of that on radio ads." https://t.co/Xnh4eKV6aS

Reply on TwitterRetweet on Twitter14Like on Twitter32Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
SolidFootingJulie Drury@SolidFooting·
11 Dec

@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.

Reply on TwitterRetweet on Twitter2Like on Twitter6Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
nickdawsonNick Dawson@nickdawson·
11 Dec

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

Reply on TwitterRetweet on Twitter37Like on Twitter160Twitter
PatientCriticalPatient Critical Co-op@PatientCritical·
11 Dec

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!

Reply on TwitterRetweet on Twitter4Like on Twitter6Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
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

Reply on TwitterRetweet on Twitter1Like on Twitter1Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
fredtrotterfredtrotter@fredtrotter·
11 Dec

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

Reply on TwitterRetweet on Twitter2Like on Twitter1Twitter
PatientCriticalPatient Critical Co-op@PatientCritical·
11 Dec

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

Reply on TwitterRetweet on TwitterLike on TwitterTwitter
PatientCriticalPatient Critical Co-op@PatientCritical·
11 Dec

cc @vmontori @s4pm @patientrev @MichaelMarmot

Reply on TwitterRetweet on Twitter1Like on Twitter4Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
RachbcooperRachel Cooper@Rachbcooper·
11 Dec

@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?

Reply on TwitterRetweet on Twitter2Like on Twitter1Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
majidumaUmair Majid@majiduma·
11 Dec

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?

Reply on TwitterRetweet on Twitter1Like on Twitter1Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
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

Reply on TwitterRetweet on Twitter3Like on Twitter3Twitter
PatientCriticalPatient Critical Co-op@PatientCritical·
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

Reply on TwitterRetweet on TwitterLike on TwitterTwitter
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

Reply on TwitterRetweet on TwitterLike on Twitter2Twitter
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

2
Reply on TwitterRetweet on TwitterLike on TwitterTwitter
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

Reply on TwitterRetweet on TwitterLike on TwitterTwitter
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

Reply on TwitterRetweet on Twitter1Like on Twitter1Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
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

Reply on TwitterRetweet on Twitter15Like on Twitter39Twitter
Retweet on TwitterPatient Critical Co-op Retweeted
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

Reply on TwitterRetweet on Twitter2Like on Twitter4Twitter
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

Reply on TwitterRetweet on TwitterLike on TwitterTwitter
Retweet on TwitterPatient Critical Co-op Retweeted
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

Reply on TwitterRetweet on Twitter19Like on Twitter44Twitter
Load More...

Your Voice Matters!

We are a not-for-profit, member-powered co-operative, working for You to build community, awareness and a Patient voice to work with government, healthcare providers & businesses.

Patient Critical Co-op works to create real partnerships with practitioners, government & industry, embracing diversity in perspectives to find solutions that work better for everyone.

Make a Donation:

Patient Critical Co-op is not funded by outside organizations. To help ensure a strong patient voice, individuals can donate here:

Your use of this website signifies agreement with our Terms of Service. Please review them here.

Patient Critical Co-op 2017
  • About
  • Directory
  • Podcast
  • Resources
  • Members
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

ABOUT PATIENT CRITICAL CO-OP