Discover and read the best of Twitter Threads about #advocacy

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#Advocacy thread.
A key recommendation in the @reviewCSC is for there to be independent, opt-out advocacy.
Implementation of this would be globally ground-breaking and a vg safeguard for children's rights.
#CareReview 🧵 Image
It is confusing, difficult and sometimes traumatic entering care. An #independentadvocate is there to be on the child's side. It is someone to represent their needs and wishes so that they are central in making and reviewing care plans.
Running @whocaresscot I saw firsthand how advocacy was a life-line for people in the most vulnerable situations. It gave them hope and built trust when they saw they were heard.
Having a voice over decisions that affect you is a cornerstone of children's rights.
Read 12 tweets
Today, a group of fiercely dedicated, bold and brilliant medical students did something pretty spectacular and I’d like to share it with you, what it signifies and why we should care. Whether you’re in medicine or not, I urge you to read on

A 🧵:
MS4 (4th yr medical student) at University of Illinois Chicago, @UgwudikePearl, who I’ve had the honor and privilege of mentoring, spearheaded the first Illinois Dermatology Trainee Advocacy Day. #IDTAD22

You can read about it here: idtad.org
She modeled it after a similar event directed by @DrAveryLaChance for Massachusetts.

The goal was to host a day of learning, sharing and connecting over the importance of advocacy in medicine and in dermatology specifically.
Read 19 tweets
Happening now, all are welcome to tune in for this FREE half day session on advocacy in dermatology! #IDTAD22

eventbrite.com/e/illinois-der…
First up, the incredible Dr. Murad Alam, speaking about the nuts and bolts of #advocacy work in #dermatology
#dermtwitter
Next, Dr. Robert Brodell speaking about the importance of your purpose in developing yourself as an advocate.
Read 10 tweets
"Retha is a remarkable person who saw a need and moved forward to fill that need. After becoming ill with #MECFS she formed a Facebook support group in 2012." #fundraising
gogetfunding.com/imhopeful-reth…
"She became aware of the dire needs of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. She realized something had to be done for #MECFS in #SouthAfrica and founded The @mecfs_sa"
"The Foundation provides #healthcare and counselling services for people with #MECFS who cannot afford it; raises awareness of ME/CFS, and #advocates for the rights and interests of people with ME/CFS." #imhopeful
Read 5 tweets
I’ve been contacted 2x just this wk—1 IRL acquaintance & 1 person I know only via Twitter—after they got imaging results in portal before their dr. They DM’d w/ screenshots, panicked, asking for help. I’m 💯 for pt access to #EHR, but #CuresAct implementation needs a MAJOR reboot
Whenever I have expressed concern about #CuresAct, #advocacy often tells me it’s still better. But it def was not better for these folks, nor for me dropping everything to help ppl who aren’t my pts, whose records I lack, & whose drs I don’t even know, i.e., it’s bad care. 😔
And I’m always happy to help patients, genuinely. I actually started using Twitter to be able to report out from #SABCS17 (I think) for #advocacy. But I don’t like providing bad medical care, & this is a set-up for doing so. We need a systems fix so pts aren’t left hanging…
Read 4 tweets
.@eminesaner @guardian article on highly sensitive (HS) ppl says:

1) Large overlap w/autism
2) HS≠autism
3) Society should "recognise and nurture" ppl with HS traits

TFW MSM mirrors #actuallyautistic advocacy while managing specifically to exclude us.

theguardian.com/lifeandstyle/2…
@eminesaner @guardian 2/ Not that I begrudge advocacy for compassion toward HS ppl, or anyone else. But AFAIK, nobody is electrocuting HS ppl or using techniques the WHO defines as torture on them and calling it therapy. There's a reason #actuallyautistic ppl feel some urgency about this issue.
@eminesaner @guardian 3/ So it is a bit jarring that the reason #autism is discussed at all in the article is for the purpose of surgically carving us out of the neurodiverse population the author is advocating for.
Read 6 tweets
The Medicare DIS-Advantage Plans...
Many seniors are being lured into Medicare Advantage Plans due to the added benefits of hearing, dental, and gym membership coverage. Image
These plans are actually run by private insurers and actually quite profitable for insurance companies with profit margins of 5% or greater (industry average is 4%) khn.org/.../medicare-a…
Further these plans have the added problems of:
1) Narrow Networks - in fact, many of the most prestigious cancer centers in the country are excluded from these plans. Oddly enough 60% of Cancer diagnoses are in Medicare aged individuals... cancer.gov/about.../cause…
Read 6 tweets
People and Corporations show you who they are... We choose to believe them!

Ohhhh the irony, two of the bad actors (insurance companies and private equity) that are inflating medical costs and harming patients and healers are suing each other and exposing to us all just a
glimpse of the deception/exploitation/greed that these corps have been using to put profits >>> patients.

United is suing Team Health (owned by the private equity Blackstone group) for over coding and thus overcharging patients by $100 million.
Fremont Emergency Medicine (an affiliate of Team Health) is suing United for their gross underpayment of frontline clinicians.

It's likely that to some extent both are true...

Private Equity is harmful to patient care because they often boost their own profits by
Read 8 tweets
No, no thanks, no gracias, not in a million years, never ever…

No Optum I do not want to be apart of your racketeering swamp of vertical integration.

Let’s talk about some Optum facts:
Optum is now the single largest owner of Physicians.
Optum is a subsidiary of United Health Group.

In Q2 of 2021 UHG made $4.3 billion in profits and $71.3 billion in revenue.

UHG stock share prices have grown 2200% (from $20.02 to $460.47) since Nov 2008.
Two of the main ways UHG makes such massive profits is to deny payments to physicians for services rendered (I hear from physicians everyday that this happens to) and because their PBM OptumRx uses spread pricing to inflate the cost of medications their members purchase
Read 5 tweets
"The Healthcare System breed passivity and dependence..." ~ Steve Forbes
The main ways that the hospitals and insurance companies do this is to:
1) Hide their prices
2) Make it complex to understand
3) Build rapport to enlist trust in patients that they will be taken care of
However what we see everyday is that these folks use deception, complexity, narrow networks and many more tactics to make it difficult and complex for patients to get any benefit from their health insurance.
Where health insurance is difficult and complex, Medical Cost Sharing
is simple and easy.
You make a monthly contribution, you have an initial unsharable amount, and you can choose any doctor you want! #simple #easy
Check out our website selfdirectedmedical.com for more information about how you too may be able to find your Checkmate
Read 5 tweets
Excited to hear from @YadiraCaraveo (who was @DrBenHoffman’s resident, now a #tweetiatrician and CO state rep!) #AAP2021
- Kids’ issues not always taken seriously in govt since they don’t vote so it’s OUR job to advocate for policies that #PutKids1st
Thankful for #tweetiatricians in office @DrPanMD @RepKimSchrier plus ppl like @suwumd @NancyGraffMD @kcalvinaap @AmerAcadPeds #AAPLegCon staff (and many others not on Twitter) who organize legislative visits on multiple levels!
#Advocacy tips
- many important decisions made at state/local levels
- maybe better to contact legislators when NOT in session to establish relationships
- join AAP lists for alerts on various issues/bills
- consider running for office eg @docsinpolitics @runforsomething
#AAP2021
Read 5 tweets
#AndrewYang and #KrystalBall have long conversation, on #YangSpeaks (now #Forward) about his new party (arguably NOT a party), what it will do, and why.

#YangGang have been waiting for definitive answers. Well, your wait is... not really over😵‍💫
What do I mean by that? Well...

@AndrewYang said he IS starting a new party...
BUT he "answered" the question of whether the Forward party would run candidates by saying it will back #Democrats and #Republicans who align with Forward policy...
open.spotify.com/episode/0XZgPT…
He said he is forming a new party because he doesn't believe changing #election rules in favor of more parties is likely to happen from within the #duopoly...

BUT, they're going to back duopoly candidates, and didn't mention running their own...
Read 8 tweets
Here’s something I’d like to try. Below are a list of workshop ideas that I have ready to go but wonder about interest. These would be first Live on Instagram and Facebook but then published to my website for free viewing & my YouTube channel. Like or comment. Here they are:
Autistic bug out bag: how to prepare yourself for sensory inputs while enjoying the adventure of life

Like or comment to support this video creation by The unLibrarian.

#autism #neurodiverse #neurodiversity #ConstructiveAdaptation #EverydayMagic #SelfCare
The link between self advocacy and confidence: removing the aggressive narrative

Like or comment to support this video creation by The unLibrarian.

#advocacy #disability #SelfCare
Read 9 tweets
Starting the conversation on #SciencePolicy and #Advocacy this morning!

How do we translate science at the bench to our policymakers?
There are two different types of Science Policy:

1. Science for policy: leveraging the scientific process in decision-making

2. Policy for Science: the rules and policies by which science can be done

Include science in the conversation!

- @ChanelMatney
How do figure out if you're interested in the integration of science & policy?

Start with informational interviews with people involved in science policy!

@AdrianaBankston
Read 8 tweets
Thread: Thoughts on #valuebased & #patientcenteredcare

Within #healthcare & #advocacy there seems to be a great deal of discussion on both #valuebased care & #PCC. #Healthcare costs have skyrocketed’ & thus a need to #reduce. I am not an #economist but as a #caregiver I 1/
definitely have seen ‘waste’. From my POV costs will continue to skyrocket even if #valuebased care is implemented. One reason (again not an economist) is the vulture ‘istic’ aspect of industries profiting from our system. The other reason is that our system is not centered 2/
around the #patient or patients needs. Thus, if the value based metric is reduced hospital admissions, this, on the face seems straight forth, however if the patients needs are not taken into account but only focused on established metric, costs could (& I will argue often r) 3/
Read 14 tweets
New in print: Our @JofHumanRights article on the use of #gendered #framing by #humanrights #advocacy groups. Advocates or researchers: get free online access for a limited time! tandfonline.com/eprint/RW3NUBG…. Highlights & takeaways below. 1/13
Problem: Human rights groups use advocacy campaigns that highlight the sex &/or gender roles of victims or survivors. They do this to generate strong emotions, empathy, grab attention, mobilize. It's problematic. jstor.org/stable/3693516 @charlicarpenter. But does it work? 2/13
Research: My @WoosterPSCI colleagues Michele Leiby, Angie Bos & I examine whether gendered framing affects how individuals perceive #humanrights victims portrayed in advocacy campaigns & whether that makes it easier to mobilize consensus or action on behalf of the campaign. 3/13
Read 14 tweets
I wanted to share some comments by #parents whose children have #pancreatitis. As I have shared before, the #pain care for these kids is NOT adequate. Their #pain is often not being addressed. I have asked parents to start writing up their stories to share. When #pain is not 1/
addressed it causes trauma, not only for the child/youth but parents. We know unaddressed #pain can lead to #chronicpain. I absolutely believe in #biopyschosocial approach but what we are seeing is a #psychosocial approach being utilized and #bio aspect missing. This leaves 2/
#parents and #patients feeling angry & abandoned. One of the reasons I started getting involved in #advocacy is that my kids #pain was dismissed, they were labeled. This leads to #trauma, #chronicpain & distrust of #physician. What HCP need to understand is that when this is 3/
Read 7 tweets
🧵on #accountability & the work of #IIMM. Many have criticized the #UN in the last 4 months for only issuing statements & expressing 'grave concern.' But behind the scenes people are actively working towards a mechanism that will ensure accountability. #WhatsHappeningInMyanmar
1. Already in September 2018, the @UN_HRC has established an "ongoing independent mechanism to collect, consolidate, preserve and analyse evidence of the most serious international crimes and violations of international law committed in #Myanmar since 2011 iimm.un.org
2. The #IIMM will "facilitate and expedite fair and independent criminal proceedings, in accordance with international law standards, in national, regional or international courts or tribunals that have or may in the future have jurisdiction over these crimes", eg ICJ and ICC
Read 14 tweets
#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/
to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/
Read 21 tweets
Still reflecting on a Grand Rounds presentation by @TaraLaguMD last week on people with disabilities as an unrecognized health disparity population. And how there needs to be systemic change, with attention to detecting, understanding, and reducing. #DisabilityPolicy

A 🧵 (1/8)
A selection of articles discussed in the talk:

Paper #1
pubmed.ncbi.nlm.nih.gov/23552258/

(2/8)
Read 8 tweets
Okay, I love @POTUS #CaregiverInChief but lowering drug prices is a complicated economic web — healthcare isn’t something that you pay for like a new car, it’s mediated by a third party 1/x #drugprices #pharma #medicare #medicaid
Take International Reference Pricing for example. (Lost you already, haven’t I?) This type of negotiation tool ties drug prices to caps set using “QALYs” - Quality Adjusted Life Years 2/ #health #pharma #medicine #innovation #caregiving #advocacy statnews.com/2019/02/22/qal…
3/ Don’t get me wrong - #health care needs to be affordable & #accessible & costs should be accessible. But tying access to medicines based on the economic “value” of a person’s life unfairly discriminated against older #adults & ppl w/ #disabilities, see ncd.gov/sites/default/…
Read 15 tweets
In light of the Boston police Union leader child abuse, this is very plausible, even probable. I have 2x, on behalf of someone else, reported, via Title IX - the woman or gay man was not feeling safe enuf to report. Yes, there is blowback when one reports. But we can’t be silent.
I am a mandated reporter as a #pediatrician. I *must* report for my patients or face legal consequences. Am same for staff, students, trainees. But in #EmergencyMedicine who do I call if a child may be unsafe at home? Sometimes, cops. Are cops safe?

boston.com/news/local-new…
I have seen #mentalhealth and entire life paths destroyed by abusers preying on children like: This happened to too many people I know. I have seen institutions intimidate, mislabel, bury stories of the victims. (Some predators wait until 18th birthday.)

nytimes.com/2017/08/07/nyr…
Read 29 tweets

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