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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Cormac Russell @CormacRussell·

Folks often fail to recognize that personal health can be gained at the expense of wellness. As industrialized societies have come to idolize individual health they have placed greater emphasis on life style choices and self care and less on shared space and belonging. 1/2

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Kelly S @KellyOT·

@PatientCritical My doc office does not take messages if they are on the line. I can’t call back x 5 when I’m at work. No calls answered during lunch. Can take weeks to get through to schedule an appointment

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Patient Critical Co-op @PatientCritical·

When you miss a Dr's call:
-no message
-NO second call attempt
-call display blocked

When a Dr misses your call:
-callback=busy signal
-callback=long hold
-result? Reschedule apptmt

PTSD is real.
(Pitiful Telephone Service by Doctors)

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Patient Critical Co-op @PatientCritical·

Without interoperability & easy, universal access to data, the right to access it means little.

Is there a seat for patients to help @nshealth design healthdata access that works for them?

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Patient Commando @PatientCommando·

Hey #Toronto area patient advisors. Check out this remarkable opportunity to influence health care providers at the earliest stage of training. One of the most rewarding experiences I've had. @PatientAdvisors @PatientsCanada

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Timothy Caulfield@CaulfieldTim·

Talking to a vaccine-hesitant family member or friend? Those conversations tough but so important.

My (not comprehensive) list of things to consider.

cc @DrJenGunter @aetiology @vaccine_trust @UAlbertaSPH @UAlberta @CBCEdmonton @GidMK @DrSherryPagoto @KizzyPhD @drkiki

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Amy Ma - 馬錦華 - Settler on Indigenous land @Ctzen_Improver·

Join us tonight for an excellent and timely discussion about the Digital Divide. Definitely has implications for #HealthEquity #HCLDR cc @vikbakhru @PatientCritical https://twitter.com/JoeBabaian/status/1422579949374947334

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Danyaal Raza@DanyaalRaza·

Ford is able to pay MDs between $170 to $220/hour at vaccine clinics, but can't commit to a permanent pay increase to PSWs of just $3/hour. https://twitter.com/CBCLorenda/status/1412068164125564929

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Dennis Kendel @DennisKendel·

SCPOR Report May, 2021- Learn about new opportunities for patient engagement in healthcare research in Saskatchewan:
https://www.scpor.ca/news-1/2021/5/28/scpor-report-may-2021 @hqcsask @USaskMedDean @USaskHealthSc @SaskHealth @PatientAdvisors @PatientCritical @AbSPORU_PEP

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Patient Critical Co-op @PatientCritical·

Politics is not science based.

Society isn't about requiring a burden of proof before exercising compassion.

Evidence & studies are not the enemy of caring but can be leveraged as such.

I believe people need to invest more in society -& yes, politics- before we see a change.

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Patient Critical Co-op @PatientCritical·

Politics of expediency and interest, NOT service.

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Patient Critical Co-op @PatientCritical·

The problem is? We ARE content to wait...until we are drowning.

We ALL need to challenge ANY authorities happy with status quo.

I'm not advocating we burn our bridges, but we've stopped trying to hold authority's feet to the fire.

We're comfortable until we're actively scared.

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Jan Oldenburg @janoldenburg·

I'm being bribed with a gift card to delete a negative review on Amazon. Has this happened to anyone else?

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Patient Critical Co-op @PatientCritical·

Where would YOU send an overwhelmed caregiver looking for resources, checklists & articles about bringing a loved one home after major surgery?

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Bob Wachter@Bob_Wachter·

11/ Why is Delta scarier? First, it appears to be even more infectious than the Alpha variant, probably by a similar amount (~40% more infectious than Alpha.)(h/t @EricTopol for @BBC table below) This means the same exposure that a person might have had last year is now about…

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Patient Critical Co-op @PatientCritical·

Danyaal nails the danger of normalizing disconnected #digitalhealth, marketed solely for profit.

There's no rollout 2.0 for digital health: it will be what we let it be. Time to pay attention to the slippery slope.

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Maggie Keresteci 🇨🇦@MaggieKeresteci·

The movement led by #caregivers & #patients in Canada to make the care in healthcare a verb, not a noun, not a place, not a system is not a fad, not the healthcare model du’jour.

We’re starting a #healthcare movement in this country that there is no going back from.

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Patient Critical Co-op @PatientCritical·

Dare to dream :)

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Amy Ma - 馬錦華 - Settler on Indigenous land @Ctzen_Improver·

Sounds promising! @pttopt @PatientCommando @PatientCritical @anetto https://twitter.com/PatientVoicesBC/status/1400123238403825674

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Claire Snyman @clairehsnyman·

@TCOrobin talks about medical error and her #patientexperience during panel on how can we improve error and apology practice? #NHLC2021

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