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Home 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

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PatientCriticalPatient Critical Co-op@PatientCritical·
21 Jan

Unpleasant truth: patients -even overwhelmed- are responsible for making #patientpartnership work.

Patients have a responsibility to insist how we are included in #codesign.

If we wait to be consulted after decisions are made we have surrendered #shareddecisionmaking to others.

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docdanielleDanielle Martin@docdanielle·
20 Jan

Canada needs a “Health in All Policies” action plan now - clear and convincing call in today's @CMAJ @PGfor https://www.cmaj.ca/content/192/3/E61

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HSO_worldHealth Standards Org@HSO_world·
13 Jan

YOU'RE INVITED to "Let’s Get Real: Patients must be Partners - The How Edition." Join our Feb 6 #webinar and learn HOW you can engage effectively for positive change. Register here: #peoplepoweredhealth #patientsmustbepartners #peoplecentredcare https://bit.ly/35OnNZC

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NightShiftMDDr. Brian Goldman@NightShiftMD·
19 Jan

This. This. And this. https://twitter.com/TheSGEM/status/1218717089801830402

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PatientCriticalPatient Critical Co-op@PatientCritical·
19 Jan

"Never assume that what you are seeing or experiencing is everyone else’s reality. Look to data to give you a clear picture...leaders in the field to give you a sense of where things are going. And in the case of online communications...sometimes means e-patients, not clinicians"

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PatientCriticalPatient Critical Co-op@PatientCritical·
19 Jan

.@susannahfox captures why continued investing in #data #silos is wrong:
"We should all be working toward freeing the data &..., building the infrastructure & tools that allows someone to..say, “Yes, I’m ready. Now, how do I get my data?” https://susannahfox.com/2019/09/16/why-should-anyone-care-about-health-data-interoperability/ #takeontech2020

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PatientCriticalPatient Critical Co-op@PatientCritical·
19 Jan

This article mentions one thing I want to see--a solution we need INSTEAD of 18 more incomplete, non-sharing portals (on our way to true #interoperability):

"Create An Immediate Bridge...Using Technology That Consumers Have Right Now—(secure)Email"

http://tiny.cc/uvjviz

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SeanJMolloySean Molloy@SeanJMolloy·
19 Jan

There is no greater manifestation of this than electronic medical records - designed for billing/utilization, not people. The greatest workaround is “the portal.” #design #EMR #EHR @mulegirl https://twitter.com/mulegirl/status/1218568764213493760

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ryansdohertyRyan Doherty, PhD@ryansdoherty·
17 Jan

@jillpromoli @AngieHamson @anetto @SolidFooting @PFEAMorin @pttopt @GilmanFamily @couragesings @PatientCritical
When going to a hospital, nursing home, or healthcare facility during flu season, would you want to know the % of staff who had received a flushot? Some are as low as 15-50%...

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PatientCriticalPatient Critical Co-op@PatientCritical·
16 Jan

Very promising! Agree Canada needs to own its own data cohort of this size/kind.

Am curious what protections you have to ensure orgs don't use data in unintended ways-as with @23andMe sale to @GSK, Google/Deepmind/NHS & other public trust/#bigdata controversies?

#CADTHtalks

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paulwrightpfccPaul Wright RN@paulwrightpfcc·
15 Jan

Proud to share Alberta Health Services has officially launched its educational #endpjparalysis website for patients, families , care providers and interested colleagues across the world. https://www.albertahealthservices.ca/info/Page15971.aspx @BrianwDolan @ikhenderson @PeteGordon68 @JenniferSymon1 @mkfrdmn

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CPHO_CanadaDr. Theresa Tam@CPHO_Canada·
15 Jan

Cdns use the health system in many ways—medical appointments, flu clinics, medical emergencies. All parts of Canada’s health system can help eliminate #stigma as a barrier to care. Find out how you can join me to #EndStigma: http://ow.ly/QvwX50xPeKm

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SolidFootingJulie Drury@SolidFooting·
15 Jan

What do you mean when you say X?

Understand your organizational culture when it comes to partnering with families, then ask "What can we do better?" https://twitter.com/KathyKastner/status/1217260050013655040

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NightShiftMDDr. Brian Goldman@NightShiftMD·
15 Jan

'A good news story': Lanark becomes first in Canada to adopt Icelandic model for reducing teen social harm http://ottawacitizen.com/news/local-news/a-good-news-story-lanark-becomes-first-in-canada-to-adopt-icelandic-model-for-reducing-teen-social-harm/ If you want to know what it's about, check out this episode of @cbcwhitecoat : http://bit.ly/2CRPc2R

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vmontoriVictor Montori, MD@vmontori·
15 Jan

Great grand rounds at @MayoClinicEndo by Professor @doreen_rabi on the challenges of guidelines and care including this set of great quotes including one by @KerUnit’s @ihargraves

2
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PatientCriticalPatient Critical Co-op@PatientCritical·
15 Jan

A5: NONE OF THE ABOVE until Patients, Families and Caregivers have a seat at the very first table:
where decisions are made. In board rooms, the admin offices, C Suites.

There is no #codesign & we'll never be #BetterTogether without that level of #codesign to start.

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PatientCriticalPatient Critical Co-op@PatientCritical·
15 Jan

Yes! PFC Presence lacks process, tools and techniques to manage the people side of change in healthcare!

Without hard numbers & strong commitments we can't achieve any outcomes, or truly focus on how people & processes are impacted by the changes we are making. #BetterTogether

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PatientCriticalPatient Critical Co-op@PatientCritical·
15 Jan

Involve patients, caregivers and families from the beginning.

That means hard targets, and advocating for funding changes based on successes and challenges to meet true #codesign.

Sentiment alone will not make us #BetterTogether, it has to be genuinely responsive & inclusive.

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PatientCriticalPatient Critical Co-op@PatientCritical·
15 Jan

A3: Teach PFAC how to emotionally & within their institutional role, truly advocate for the patients.

How many of us have heard PFACs side w/staff against patients they're there to serve, when labeled difficult?

Guidelines, funding & oversight remain challenges. #BetterTogether

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KathyKastnerkathy kastner@KathyKastner·
15 Jan

#BetterTogether jumping in late T3: may sound simple, may be considered a 'given' : ensure your PFAC understand acronyms, jargon, the language of health care, and not afraid to ask

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Patient Critical Co-op 2017
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