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Photo of Beth Campbell Duke

Beth Campbell Duke

Personal Victoria British Columbia Canada Web: Transplant Rogues

Categories: Health Literacy, Other Advocacy, Patient Engagement, Professional Advocate, Service Availability, Volunteer

Updated 11 months ago.

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Photo of Tina Ceroni

Tina Ceroni

Personal Toronto Ontario

Categories: Ontario, Other Advocacy, Patient Engagement, Patient Inclusion in Research

Updated 11 months ago.

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Photo of Shanon McQuitty

Shanon McQuitty

Personal Vancouver British Columbia

Categories: British Columbia, Other Advocacy, Patient Engagement, Volunteer

Updated 11 months ago.

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Photo of Donna Rubenstein

Donna Rubenstein

Email: donnaruben@gmail.com

Categories: Access to Records, Health Literacy, Mental Health, Nova Scotia, Other Advocacy, Patient Engagement, Patient Inclusion in Research, Volunteer

Updated 2 months ago.

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Mariana Bueno @mari_bueno·

We have made incredible gain in knowledge but only 14% of the research reach patients. @DrCChambers highlights the huge knowledge to practice gap in #pediatric #painmanagement. #ItDoesntHaveToHurt #BrainTalks

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DRichards @TO_dpr·

“Of course patients are going to go online for info! Our obligation as healthcare providers is to be there & to provide them evidence-based info” - @DrCChambers #ItDoesntHaveToHurt #TalkBrain

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Patient Critical Co-op @PatientCritical·

Patients & citizens will "help decide what data should be included & how the data should be connected & used...(a) Public & Patient Advisory Committee will advise all those working on issues related to data access & privacy & on ways to demystify the world of data".

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Solutions for Kids in Pain @KidsInPain·

Only 1 hour to go until our @KidsInPain event in Toronto with @OntarioBrain!

Not able to attend in person? Watch online here: https://t.co/DIPnYiOMob

Don't forget to follow the #ItDoesntHaveToHurt & #TalkBrain hashtags for live tweets!

@DalhousieU @ChildHealthCan

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Patient Critical Co-op @PatientCritical·

"The results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making."

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Patient Critical Co-op @PatientCritical·

The tide has turned for young adults in #peerhealthadvice & #peer2peer support:
https://t.co/ri1AVIwwGB

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Patient Critical Co-op @PatientCritical·

“medical misinformation (is any) health-related claim of fact currently false due to a lack of scientific evidence...contemporary misinformation (is) supplanting well-proven interventions & ideas...that are clearly false &, in some cases, harmful."

https://t.co/mPa8Q8IRB1

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Cancer Survivor Social Media @CancerSurvSM·

Hello everyone! We are super excited about our first #CSSMchat coming up this Wednesday! If this is your first Twitter chat, we've put together a brief guide to help you get the most out of it. https://t.co/OKM8sNndEy

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Debbe McCall @DebbeMcCall·

Shared Decision Making and the Importance of Time https://t.co/C5jqdGTMrK

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Patient Critical Co-op @PatientCritical·

To connect #patient & #caregiver advocates by region or area of interest, please feel free to share or add your name to our Advocate’s Directory!

Like everything we make, curate or endorse, it’s free to the public not behind a paywall: https://t.co/EJ9OoTpZJK

#patientvoice

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Patient Critical Co-op @PatientCritical·

Our last podcast explored peer to peer & online communities-how they grow connections, literacy & resilience: https://t.co/yXdYMgbXiP

Find more in our Resource Hub: https://t.co/2cSKsgORof

OR

Submit YOUR favorite p2p community to the Hub & help others: https://t.co/7CZWa5PRf5

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Mary Politi @mcpoliti·

brilliant piece on #shareddecisionmaking & time. What if clinicians were fully present? A minute spent giving info may be less important than a minute spent waiting for questions, responding w/empathy. @JAMA_current @vmontori @AMStiggelbout @ArwenPieterse https://t.co/5vew7X4qse

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Patient Critical Co-op @PatientCritical·

Had a very meaningful exchange with @foundingScott on advocacy vs. action.

We all need to evaluate what is rhetoric, what is constructive, fair to call out & what is just tearing down.

if more of us discuss what matters, what works & doesn’t, the better our society & discourse.

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Patient Critical Co-op @PatientCritical·

Patients will NEVER be given a seat at a table controlled by biz/gov/docs.

It will never happen.

Did that make you angry?

Disagree?

It still won’t change things.

What will?

We must convince many MANY more people to hold politicians accountable.

Nothing else will change it.

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Patient Critical Co-op @PatientCritical·

This should be as easy and accepted as a patient requesting a second opinion or refusing treatment, if of sound mind. The logic & precedent exists.

EGs: your psychiatrist doesn’t need to know about your childhood immunization. Old dr’s shouldn’t have access to future records.

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Bob Brown @ReasObBob·

Notice that #HealthIT vendors -- and the various walled garden networks they so heavily dominate -- are so proud that they're giving us access to *our* personal health information?

Under current regs they're required to.

I want agency, not just access.

#PrinciplesFirst

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