Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop | Rheumatoid Arthritis Warrior

Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop

PCORI vertical bannerTiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area!

Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes we’ve weathered, but the wind gusts were big and unpredictable so they couldn’t put kids in buses I suppose. A good call, we realized, when my Suburban was blown around on the Beachline on the way to the airport. But the flight got off on time as if Sandy didn’t exist.

A kind soldier gave up his window seat to Tiger since he hadn’t flown since he was a baby. He gasped the first time the plane dipped under the clouds and he saw the colored leaves of fall, “Leaves!”

We made it to the hotel in plenty of time, but sans hearing aid batteries. Not. Good. A CVS was only a couple of blocks away and the windy weather was beautiful. It was hard as a walk always is, but we had success.

Back inside the hotel, there was a short staircase. A woman approached me, watching me struggle, “Do you have a torn ACL?”

“No, I answered. It’s Rheumatoid disease.”

She said, “Oh, well that’s the same type of thing. Just as bad.”

Stunned, I agreed, “Yes, except that it’s all of my joints.”

“So true,” she added, “God bless you.”

This was something different. Different and wonderful. A good sign.

The picture of my feet shows how they looked while I rested for a while after walking – bright red.

red feet Rheumatoid disease

Next, I’m sharing some information from a PCORI email that will help you know why we’re here and why it’s important to our community. I’ll share more in the future about a certain PCORI grant I’m working on, but this weekend, you actually have an opportunity to observe and participate in the discussion.

Why are you there?

“The Patient-Centered Outcomes Research Institute (PCORI) is providing a free webcast for the plenary sessions of its patient engagement workshop, “Transforming Patient-Centered Research: Building Partnerships and Promising Models,” October 27-28. The workshop is designed to help PCORI build a patient-centered research community.

Workshop participants will help PCORI establish procedures for identifying research questions, reviewing research proposals for funding, and ensuring patient participation throughout the research process. It is the first in a series of workshops aimed at bringing PCORI’s vision for patient and stakeholder engagement to life.”

The workshop’s five topics:

  1. Identifying and Selecting Research Questions
  2. Reviewing Research Proposals for Funding
  3. Matching Patients and Stakeholders with Researchers
  4. Disseminating Research to the Community
  5. Evaluating PCORI’s Patient and Stakeholder Engagement Programs

How can we learn more?

To take part, you can:

1) Watch a live webcast of workshop plenary sessions:
Saturday, October 27, 8:30 a.m.-11:00 a.m. ET
Sunday, October 28, 8:00 a.m.-12:30 p.m. ET
2) Join the conversation on Twitter by following @PCORI and using the #PCORI hashtag during the workshop.
3) Provide feedback to PCORI on the workshop topics by email to Feedback received will be considered as PCORI develops a report on the workshop.

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Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/

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5 thoughts on “Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop

  • October 27, 2012 at 10:55 am

    Kelly, I didn’t realize you are down here in Fl! I’m in the WPB area. I travel that way for work occasionaly! Glad to know you are here, neighbor..

  • October 29, 2012 at 12:57 pm

    Travelling is SO HARD. I’ll be thinking of you Kelly!! And thank you for all your advocacy.

  • October 29, 2012 at 7:25 pm

    Readers need to be aware, that if the health law, “Obamacare” is repealed, the Patient Centered Outcome Research Institute (PCORI) Institute would be abolished.
    The PCORI was established in 2010 by Obamacare — the Patient Protection and Affordable Care Act. PCORI’s mission is to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.
    Comparative effectiveness research not only has the potential to improve patient care because it focuses on enhancing the evidence for making decisions about tests and treatments, but also, in my opinion, the potential to reduce the cost of defensive medicine and medical malpractice.
    The PCORI is one of many provisions of Obamacare that would make our health care system more efficient and effective — and in the long run, sustainable.

    • October 31, 2012 at 6:04 am

      Thank you so much for posting that! I completely agree.


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