PREPARE NOW

Putting Patients at the Center of Kidney Care- a PCORI funded research project

[PREPARE NOW @Kidney_Prep_Now]

Our patient co-investigator @SuzanneRuff discusses the Living Organ Donation Reimbursement Program in the Nov/Dec issue of aakpRENALIFE #CheckItOut https://t.co/TCctwEvBrI

[PREPARE NOW @Kidney_Prep_Now]

This article describes our patient & family Co-I engagement approach for our @PCORI study at @GeisingerHealth @GeisingerRsrch- we hope it provides the #nephtwitter #CKD kidney disease community a model for active patient & family engagement in #PCOR @TeriBrowne @EbonyBoulware

[PREPARE NOW @Kidney_Prep_Now]

We are excited to have this manuscript on our @PCORI-funded #CKD project patient & family Co-I engagement come out- lead by @TeriBrowne @uofsccosw & @EbonyBoulware @Duke_GIM https://t.co/Oh0sQqtG2W

[Jonathan Boote 🏳️‍🌈🇪🇺 #FBPE @jonathanboote]

Engaging patients & family members to design & implement patient-centered kidney disease research. New paper in BMC Research Involvement & Engagement https://t.co/54WSXVRtaD open access!!

[PREPARE NOW @Kidney_Prep_Now]

All of our @PCORI Patient & Family Co-Investigators were authors on this article, including @SuzanneRuff @KLangLindsey & many others not on twitter

[Kidney Medicine @KidneyMed]

@patti_ephraim @cjdiamantidis @Dr_Hill_Briggs @TeriBrowne @EbonyBoulware @dukemedicine @HopkinsMedicine @Kidney_Prep_Now #OpenAccess Editorial by @KerenLadin and Ana Rossi:

Person-Centered Kidney Education: The Path Forward

https://t.co/uFuPOkP5Ts

#KidneyDisease #CKD

[PREPARE NOW @Kidney_Prep_Now]

Thanks for the great visual abstract @KidneyMed @deniise_am for this article on our @PCORI funded @Kidney_Prep_Now project #PCORI #PCOR - you can find out more about the study here https://t.co/bNibBimvqW

[Kidney Medicine @KidneyMed]

Advanced CKD Care and Decision-Making: Which Health Care Professionals Do Patients Rely on for #CKD Treatment & Advice?

https://t.co/KtgPRZkySg #OpenAccess

@patti_ephraim @cjdiamantidis @Dr_Hill_Briggs @TeriBrowne @EbonyBoulware

#VisualAbstract by @deniise_am

[PREPARE NOW @Kidney_Prep_Now]

Great @KidneyPatients blog from our Co-Investigator @SuzanneRuff on her family's experiences with kidney transplant and the need for immunosuppressant drug coverage

[American Association of Kidney Patients @KidneyPatients]

AAKP member Suzanne Ruff explains why passing the Immunosuppressant Drug Coverage bill is so important to her on our blog. Read the full article here: https://t.co/CEzLOe2ZJz #AAKPForPatients

[PREPARE NOW @Kidney_Prep_Now]

One of our Patient Co-Investigators, Peter Woods​, who suffers from 9/11-related lung, heart, and kidney ailments, fears COVID-19 would be "a death sentence". https://t.co/5vBdLlyJjh

[PREPARE NOW @Kidney_Prep_Now]

New on the blog! Our team member (@SuzanneRuff) shares her family's story on dealing with #PolycysticKidneyDisease #PKD https://t.co/sWbJon45WA

[PREPARE NOW @Kidney_Prep_Now]

@AGrandinettiMPH Our team also loved meeting you! we look forward to releasing more of our findings from our @PCORI project over the next year (and beyond)

[Amanda Grandinetti, MPH @AGrandinettiMPH]

So excited that I got to meet the @Kidney_Prep_Now team @ the #PCORI2019 conference yesterday! Already citing their work for a research methodology paper on PROs in nephrology. Excited to one day contribute to kidney PROM knowledge in the near future! #phd #proms #patientcentered

[Suzanne Ruff @SuzanneRuff]

My favorite quote at #PECORI2019 is “Patients learned from researchers. Researchers learned from the patients.” -Elliot Israel MD. Sums it up nicely!

[PREPARE NOW @Kidney_Prep_Now]

Clarifying that the smiling faces were all in the video i.e. the only information they received was positive and the video materials showed everyone all happy with their LVAD decision- there were no negatives discussed or presented....

[PREPARE NOW @Kidney_Prep_Now]

Terrific presentation today from @mkellerkane about her Mom & family's experience with LVAD #PCORI2019

[Melinda Kane @mkellerkane]

Proud to be helping to bring the importance of shared decision making to light!

[PREPARE NOW @Kidney_Prep_Now]

"they handed us a pamphlet and we watched a video with smiling faces" - too few health care providers meaningfully engage patients in true patient-centered engagement about treatment options #PCORI2019

[PREPARE NOW @Kidney_Prep_Now]

It is great to learn more about other @PCORI funded kidney disease research projects- like these from @UNMHSC & AASTEC and @rajmehrotra1122 @danielcukor @CukorDaniel & colleagues #PCORI2019

[PREPARE NOW @Kidney_Prep_Now]

Wow the name badge labels at #PCORI2019 are awesome! Our team is excited to be here this week at the @PCORI National Meeting

[PREPARE NOW @Kidney_Prep_Now]

One of the best parts of #PCORI2019 is being able to connect to so many people here who want to improve patient-centered outcome research in kidney disease, like @AGrandinettiMPH @MBaliker

[Ginny Meadows @gmmeadows]

@mkellerkane Melinda did a fantastic job talkinf@about the importance of shared decision making in the context of LVAD implantation. We continue our journey to honor my sister (her mother) by working to ensure others facing these tough choices have better decision aids.

[PREPARE NOW @Kidney_Prep_Now]

We also start off with patients completing the Life Options values tool so we know what patients value most when it comes to kidney disease treatment choice....

[PREPARE NOW @Kidney_Prep_Now]

Our @PCORI funded project is trying to address this by providing ALL of the facts (pro & con) about all kidney disease treatment options to people newly diagnosed w kidney disease + care mgmt + peer support + behav health + RD. #PCORI2019