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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Patient Critical Co-op @PatientCritical·

1 Jul

Great analysis via @MA_Gagnon of
Court finding: confidential rebates to distributors/insurance plans should not be taken into account in pricing, increases cost for patients with deductibles or co-pays. Agree with sentiment: @PMPRB_CEPMB must protect Canadians, not drug plans.

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Patient Critical Co-op @PatientCritical·

29 Jun

Sadly, so much of what we discussed with Dave deBronkart -over two years ago- remains relevant and unresolved.

Thanks for keeping up the good fight @ePatientDave!

Listen to our discussion on #patientsaspartners here:

https://patientcritical.com/podcast/dave-debronkart-patients-as-partners/

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Bianca Wylie @biancawylie·

27 Jun

This problem exists across every public service. After decades of under-funding and privatizing, doing tech/data things that might normally seem intuitive to "fix/upgrade" as solo moves could make the entire system much worse due to automation/more privatization as a "solution".

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Bianca Wylie @biancawylie·

27 Jun

People in these systems are all part of providing care and act as gating supports in each process. Not defending workarounds or old messy systems but definitely respect them.

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Bianca Wylie @biancawylie·

27 Jun

If we don’t focus on solving the right parts of our health care problems (funding and people and systems) we will definitely make them worse with tech. Faxes are not a high priority problem.

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Andrew S. Boozary@drandrewb·

16 Jun

reminder a month in:

provincial jail costs- $9,400
hospital ward- $13,900
shelter- $2,129

social housing- $1,545

housing is a matter of social justice and sound economics.

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Jana Buhlmann @baldgrrl·

16 Jun

A caregiver, physician, and bridge builder talk about care and trauma in the time of #Covid. #FTSintheFonda #FucktheSilos @JbPPE4Q @clairehsnyman @PatientCritical @RanaAwdish @colleenmfarrell @sickboypodcast

https://youtu.be/Aj5nyY3p1d4

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Patient Critical Co-op @PatientCritical·

14 Jun

Sometimes just taking an extra moment means #ItDoesntHaveToHurt
cc @DrCChambers

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Dr. Christine Chambers @DrCChambers·

9 Jun

I just took 5 min to complete this Statistics Canada survey on parenting during the pandemic and so should you! https://www.statcan.gc.ca/eng/survey/household/5323-covid-series

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Patient Critical Co-op @PatientCritical·

9 Jun

Video replay is up for the discussion "Patient-Centricity & the Covid Pandemic" with @vmontori. Very good discussion of how & why patients really aren't included in their own healthcare decisions & what steps may help change that:

@patientrev #whywerevolt https://www.youtube.com/watch?v=OlJKjhnBdgs

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Donna Thomson @Thomsod·

5 Jun

Evidence of the deep schism between #longtermcare #family #caregivers and executives. We need to work together and recognize we need each other in a triad of patient, family and med pros. #BetterTogether #NotJustAVisitor #NotaBloodSucker @SolidFooting @DrVivianS @PatientCritical https://twitter.com/kimzarzour/status/1268937959891501058

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Patient Critical Co-op @PatientCritical·

5 Jun

Holding a virtual meeting?
Please remember to build stretch, food, drink & bio-breaks.
Put them right in the meeting invite and announce them in the call.

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Helen Bevan @helenbevan·

5 Jun

What a wise quote for thinking about creating the future we want, post #Covid19: "Machines work on feed-back. Minds work on feed-forward. We don’t need thermostats; we need new compasses. There is no ‘back to normal’. Normal has not been waiting for us". From @LeandroEHerrero

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Patient Critical Co-op @PatientCritical·

4 Jun

.@vmontori: change comes from visionary leaders, patient advocates, & by overcoming fear.

There's no lack of initiatives or voices, but fear of 'messing up' HC.

Change takes courage from each of us.

#patientengagement, #shareddecisionmaking #codesign

@patientrev #whywerevolt

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Patient Critical Co-op @PatientCritical·

4 Jun

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Patient Critical Co-op @PatientCritical·

4 Jun

Canadian HC is more likely to focus on care over profit...but it's been underfunded by policymakers with different ideas over policies of HC (IE abandoning elderly in nursing homes & isolating caregivers with blanket bans).

@vmontori @patientrev #whywerevolt #morethanavisitor

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Patient Critical Co-op @PatientCritical·

4 Jun

Is there specific legislation we can champion to de-commodify our HC systems?

@vmontori: Eliminate profit & clinicians coming to HC not to practice, but to advance in biotech and data industries.

True for not-4-profits w/well-paid board members too.
@patientrev #whywerevolt

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Patient Critical Co-op @PatientCritical·

4 Jun

The patient with multiple conditions often sees worst outcomes in HC system due to a lack of understanding the patient's need (as chosen by them) in order to respond based on those needs.

@vmontori @patientrev #whywerevolt

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Patient Critical Co-op @PatientCritical·

4 Jun

We need to align #data & #HealthTech with the PURPOSE of care....which should be patient's best interests, not sale of #patientdata or other profits of the institution or industry.

@vmontori #whywerevolt @patientrev

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Patient Critical Co-op @PatientCritical·

4 Jun

When talking about evidence based care, evidence is adjective...CARE is the verb (or noun :).

We're seeing departure from evidence to #data- a dangerous progression.

#datamining commercializing patient becomes focus #surveillancecapitalism

@vmontori @patientrec #whywerevolt

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