Learning about precision medicine with @Dividivigirl at #ACR22 - have always heard about it in the context of cancer, interesting to see how it also relates to my diagnosis of RA.

We use this tool in our work - it's very helpful!

A1) TBH, I like to shake it up a bit when new semesters and/or breaks begin. I find that I get into a rut sometimes, especially when I'm dealing a lot related to physical or mental health, that a "new start" or "season" is helpful. #CreakyChats

A2 - Some Young Patients' AREA council members work w/ their university disability offices to figure out customized accommodations. When getting my PhD, I directly communicated w/ my mentor to work on a schedule where I could max my productivity & still respond to my body. #CreakyChats

A2 - In college, I should have asked for the ability to type instead of write. I had a final where I wrote for 3 HOURS straight & my hands were furious. I also wish we had better systems in place for med emergency- Failing an exam right b4 a spinal tap was not ideal. #CreakyChats

A3) Reframing, being nice/gentle with myself (much easier said than done). I know it's not for everyone, but I disclose a lot. It's important that I start out w/ as supportive of an environment as I possibly can, because sometimes it's the only thing I can control. #CreakyChats

Kristine Carandang Amanda G Spill the tea Kristine 👀 #CreakyChats

A4) Be open to people and schedules that don't exactly fit the syllabus. #creakychats

Thanks for another #creakychats CreakyJoints.org ! We talk about seasonal and life transitions a lot at Young Patients' AREA! So important but overlooked. Until next time-

@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!

The Patient-Centered Outcomes Research Institute 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

Suz Schrandt outlines her insights on the two “types of patient engagement”. Type A is personal engagement = “How am I managing my engagement with my diagnosis, condition, shared decision making.” Type B “system level” patient engagement = “how am I using my personal experience

Thank you to our keynote speakers Suzanne Schrandt and Catherine Ames for their fantastic discussion and an invigorating way to start #PCORI23!

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

“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

“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.

These friends inspire me. Thankful we were able to spend some time together during #ACR23. Kristine Carandang We didn’t solve all of the problems with rheumatology tonight but we tried.

I don’t use Twitter/X much but Dr Ai Lyn Tan just suggested if I don’t post that I went to EULAR Congress - then it may not have really happened.

Okay #occupationaltherapy friends this looks like a study we can build off of!? Cheryl Crow, Arthritis Life

So proud and impressed w Kristine Carandang Plenary here at #EULAR EULAR Congress 2025 Let’s make it easier for our younger patients to shape research!