Young Patients' AREA

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

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. arthritis.theenthusiasticlife.com/2024/04/11/dis…

🤩Motivations for being a patient partner in research. Join us on May 9 at 1 pm PT / 4 pm ET / 8 pm UTC. 👉pxphub.org/event/webinar-… #PatientEngagement #HealthResearch #PPI #ConsumerInvolvement

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

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 …adachejournal.onlinelibrary.wiley.com/doi/full/10.11…

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

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

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 myheartsisters.org/2023/10/29/bla… via @HeartSisters

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

“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.

“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

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

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

@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

@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

@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!

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 🌟

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 bit.ly/45dZMuH

"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

.@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

'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.' healthrising.org/blog/2023/06/1…