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 Young Patients' AREA, The Patient-Centered Outcomes Research Institute 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, American Headache Society Headache Journal launches the publication of Plain Language Summaries! Access the editorial by Jenn Vallimont Robert Gibler PhD,Amy Gelfand, MD

…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 Carolyn Thomas ☮️

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 The Patient-Centered Outcomes Research Institute #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 The Patient-Centered Outcomes Research Institute

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 The Patient-Centered Outcomes Research Institute 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?' The Patient-Centered Outcomes Research Institute #pcori23

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' - Amy Bugwadia, MS #HAS2023

.Hemakumar Devan 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…

POV: you're an American who needed a heart transplant

Calling all children and families living with #CerebralPalsy . The CPPain study team is recruiting folks to participate in a survey aimed at better understanding the CP experience. Want to learn more? Email [email protected]. Access the consent form: research-survey.nshealth.ca/surveys/index.…

Our new paper in Pediatric Rheumatology describes our experience evaluating preparation for pediatric to adult care transition and implementing a written transition policy Boston Children's #pedsrheum clinic
ped-rheum.biomedcentral.com/articles/10.11…