Young Patients' AREA

We are the Young Patients' Autoimmune Research and Empowerment Alliance- trained patient partners making research inclusive for young adults like us.

[Young Patients' AREA @yp_area]

This account is managed by Mattie, our Digital Marketing Coordinator- all tweets written in the first person from her unless otherwise stated!

[Cheryl Crow, Arthritis Life @realcc]

LOVED this conversation with the fierce, passionate Catherine Ames, all about learning how to advocate as a young chronic illness patient. She's active in @yp_area, @PCORI and other important issues. We also discussed overcoming internalized ableism.

https://t.co/NA7QRzhhrK

[PxP @PxPHub]

🤩Motivations for being a patient partner in research.

Join us on May 9 at 1 pm PT / 4 pm ET / 8 pm UTC.

👉https://t.co/yTaBbKZlTZ

#PatientEngagement #HealthResearch #PPI #ConsumerInvolvement

[Dr. Dawn Richards, PhD @TO_dpr]

I also think of #PatientEngagement as a #Research method - there are things you do and things you shouldn't do. And they all contribute to building a relationship with #PatientPartners and creating a safe space for the whole team. /8

[Headache Journal @HeadacheJournal]

In an effort to make #headache & #migraine research more widely accessible, @ahsheadache Headache Journal launches the publication of Plain Language Summaries! Access the editorial by @JennVallimont Robert Gibler PhD,@aagelfand

https://t.co/VOeDz6QcRz

[Cheryl Crow, Arthritis Life @realcc]

Absolutely fantastic patient perspective posted by a data oriented patient who developed her own *colorful* excel sheet for comprehensive medical tracking - well done Dana!! Supported by young patients’ AREA

#ACr23 #ACRAmbassador #ARPrheum

[CreakyJoints.org @CreakyJoints]

If you live with an #autoimmune disorder, you may have been diagnosed through the presence of ANA antibodies. New research from #ACR23 found that a positive ANA test is not linked to increased risk of disease, which could impact the future of how we diagnose autoimmune conditions

[Carolyn Thomas ☮️ @HeartSisters]

How medicine's blame-ridden language betrays patient-centred health care:

"Words do more than reflect people’s reality. Words create reality, and affect how patients view the world and their diagnosis."

#WordsMatter #WordsThatHurt
https://t.co/K2asb9xVp1 via @HeartSisters

[PhD Voice - Independently Run @PhDVoice]

PhD students, and researchers in general, should never have to pay for things out of their own money.

#PhDVoice @PostdocVoice

[Young Patients' AREA @yp_area]

“We train researchers to look at the literature and come up with questions in their head… but we know that the literature is bias... We need to start from the communities.” - Rupa Valdez @PCORI #PCORI23 —> Questions need to be from the COMMUNITIES that are being impacted.

[Young Patients' AREA @yp_area]

“I look for a time where we get beyond survive to thrive in wellness and affirmation...I can’t train people to have empathy to give a damn for people who aren’t like them... We are not checkboxes, we are human beings seeking care.” - Mason Dunn #PCORI23 @PCORI

[Young Patients' AREA @yp_area]

Learning from Kimberly Seals Allers & Ebony Boulware about how the foundations of the US health system were built in a racist way & how the tiering needs to be dismantled for improvement. Thanks @PCORI for this session addressing racism and discrimination. #PCORI23

[Young Patients' AREA @yp_area]

Overheard by Suz Schrandt of ExPPect: "Why are you allowed to say these things about my [patient] community without talking to anyone at my community?" @PCORI #pcori23

[Young Patients' AREA @yp_area]

@PCORI
How many of you are authors of an academic paper and cannot access it because it is behind a paywall? *YP AREA Council Members and Project Team raise their hands* #pcori23

[Young Patients' AREA @yp_area]

@PCORI Suz Schrandt, YP AREA's former advisor -- Type A patient engagement (things you do to take care of yourself as a patient!) needs to be built on Type B patient engagement (eg patients on research teams helping to build programs in the healthcare system!). #pcori23

[Young Patients' AREA @yp_area]

@pcori So proud of Council Member Catherine Ames for giving the keynote at #PCORI23!! --> Currently talking about how we want to learn research from incredibly smart academics, but we cannot because they're behind paywalls!

[Dr. Rachel Zoffness @DrZoffness]

It takes SEVENTEEN YEARS for research to translate to clinical practice. 😱

No wonder we're stuck in the antiquated myth that pain is biomedical- rather than biopsychosocial. 🧠

How do we close this gap...?

#painscience #MedTwitter #painawarenessmonth 🌟

[WesElyMD @WesElyMD]

1/🧵 COVID & Autoimmune Diseases - more data 💥

My patient w #LongCOVID has new Raynaud’s and SLE (Lupus). She’s in tons of pain and is losing her fingers.

Study: N=4M people. COVID ⬆️ risk of new autoimmune Dz & vaccine was protective

https://t.co/LhLQMRP3HK

[Generation Patient @genpatient]

"Medical school isn't just sitting in a classroom, it's going to talk to patients and hear about their experience. As someone with previous experience as a patient with a chronic condition, it's been revealing being on the other side of the relationship" - @AmyBugwadia #HAS2023

[Dr. Dawn Richards, PhD @TO_dpr]

.@HemDevan rightfully recognizes that people living with various conditions are experts - they live with their conditions 24/7 and contribute meaningfully to research with this expertise #PxP23 #PatientEngagement #PPI

[Billy Hanlon @bhanlon15]

'Exercise Triggers Major Immune System Letdown in ME/CFS'

'This study assessed how the genes of immune cells (T, B, NK, dendritic, monocytes) in people with ME/CFS and healthy controls expressed themselves in response to exercise.'

https://t.co/5FbEf3zmlN