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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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picardonhealthAndré Picard@picardonhealth·
17 Oct

Life expectancy is rising in Finland – unlike in the UK and US. What’s going right? (Hint: Scandinavian countries invest in social services) https://t.co/FiZLXFtAuk via @guardian #sdoh

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PatientCriticalPatient Critical Co-op@PatientCritical·
6h

Yep, McMaster's got awesome programs, if you look.

But how are kids to learn language, maths, social studies. Health, sciences, social interaction, sex-ed, finances & budgeting. cooking & nutrition, digital literacy, #HEALTHCARE?

We need to teach the basics from public school.

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PatientCriticalPatient Critical Co-op@PatientCritical·
7h

It's hard to know which internet resources to trust. Especially in #healthcare.

We invite you to submit websites & resources you trust to @PatientCritical co-op. To help others, we will link to them (after vetting) on our free, public resource hub: https://t.co/2cSKsgORof

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PatientCriticalPatient Critical Co-op@PatientCritical·
7h

Education IS lacking for patients, along with what to trust online.

That's why we invite everyone to submit healthcare websites & downloadable resources to us at https://t.co/HP5Vm5xQby

We will link them after vetting on our free, public resource hub: https://t.co/2cSKsgORof

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PatientCriticalPatient Critical Co-op@PatientCritical·
11h

Some of the reasons clinicians still cite for continuing to limit #patientinclusion in their own care.

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PatientCriticalPatient Critical Co-op@PatientCritical·
11h

It is true: some patient groups are funded by lobby groups & co's with agendas other than patient recovery. We do need more patient-funded voices in HC.

To use that to argue against clinician's need for data on efficacy, or suggest patients are biased, is base misdirection.

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PatientCriticalPatient Critical Co-op@PatientCritical·
11h

Did you know Canada has a 100% #patient- & #caregiver- owned voice in #healthcare?

@PatientCritical co-op takes NO money from gov or biz, because we believe that's the only way to ensure our #patientvoice reflects genuine #patientexperience.

Join us: https://t.co/rr2gW0ibOn

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PatientCriticalPatient Critical Co-op@PatientCritical·
11h

On farmers, poor internet connectivity & #mentalhealth: “To be able to(video chat)in the privacy of their home(& avoid)several hours of travel...makes it easier for them to accept the help…but they need to have that connectivity.”
@gregswings @gregs_sis
https://t.co/KN0iIfmuqd

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PatientCriticalPatient Critical Co-op@PatientCritical·
11h

This is such an important distinction. Right now, #patientengagement is a hashtag and token buzzword.

Until there are clear, quantifiable procedures, training & research *with public findings* supporting #patientsaspartners in research & PFACs...it can be nothing more.

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PatientCriticalPatient Critical Co-op@PatientCritical·
14h

"Greater practitioner empathy or communication of positive messages can have small patient benefits for a range of clinical conditions, especially pain" https://t.co/yzay2qaFOQ

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PatientCriticalPatient Critical Co-op@PatientCritical·
17 Oct

The ROI in #healthcare is #health and #care.

Compensation and innovations, both important, are still side benefits, not feature sets. #pinksocks #s4pm

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FarrahSchwartz(((Farrah Schwartz)))@FarrahSchwartz·
17 Oct

Example of experience-based co-design. Redesigned MRI based on data from children and family MRI experiences, co-designed with children. Has led to reduced need for children to be sedated during MRIs and other positive outcomes #HQT2018

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JessHavens_Jess Havens@JessHavens_·
17 Oct

What happens when we stop ignoring the knowledge of patient communities? And instead be better together using knowledge from healthcare providers and patients/family?
= lessening the burden of chronic illness
@danamlewis #QS18 #wearenotwaiting

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abidma09Ali@abidma09·
17 Oct

Love these !! #qs18

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PatientCriticalPatient Critical Co-op@PatientCritical·
17 Oct

To all patients & caregivers at #HQT2018: let's keep building connections, learning & sharing together!

Add your name to @PatientCritical's free, public Advocates Directory. Share knowledge with others, learn from others & build your network & community: https://t.co/CnHuOrMoNo

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PatientCriticalPatient Critical Co-op@PatientCritical·
17 Oct

Residential schools were run by churches, funded by federal gov't. Inquests included no indigenous members.

We still don't have so many things right...concerning social determinants of health, the access to health & #codesign of care or #healthequity

#HQT2018 @TanyaTalaga #sdoh

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PatientCriticalPatient Critical Co-op@PatientCritical·
17 Oct

Seven Fallen Feathers author @TanyaTalaga talks at #hqt2018 about listening.

Status Indians didn't get right to vote until 1960. She wanted to learn why so few Indigenous people vote.

The people she talked to wanted to know why so few Cdns seem to know/care about them. #HQT2018

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margaretmharvMargaret Harvey@margaretmharv·
17 Oct

Also, doctors are woefully under qualified to treat pain. Dr. David Caplan revealed that his one day of pain management training in medical school at UofTwas hosted by a pharmaceutical company. #HQT2018

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forumCDNhealthFP Gauvin@forumCDNhealth·
10 Oct

Register now for one of @McMasterForum's webinars, which will help ensure citizens, patients and caregivers are better positioned to advocate for the changes they want to see in their system when opportunities arise https://t.co/G5cvae7wVE #ONhealth @OSSUtweets

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AlisonSteeves1Alison Steeves@AlisonSteeves1·
17 Oct

Participants at the Mock Dragon’s Den voted Patient Oriented Discharge Summary (PODS) ⁦@UHNOpenLab⁩ the highest in impact for patients in transition from hospital to home #HQT2018

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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.

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Patient Critical Co-op 2017
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