PCORI – Creating a Culture for Patient-Centered Research | Rheumatoid Arthritis Warrior

PCORI – Creating a Culture for Patient-Centered Research

Note! For more snapshots including the posters summarizing the PCORI workshop – click here.

This weekend I attended a PCORI workshop called Transforming Patient-Centered Research: Building Partnerships and Promising Models. I’ve watched some PCORI meetings in the past since they use live stream webcasts to provide transparency. Here are some of my impressions regarding the weekend that seemed about a week long! I think it will take another post to summarize the meeting content so I’ll try to do that for you soon as well. If you subscribe to this blog because you’re a rheumatology patient or caregiver, there are specific comments below about why this is especially important for us!

Patient-driven research: my hope for PCORI

Kelly and Tiger at PCORI workshopThe goal of the PCORI workshop was to “help PCORI build a patient-centered research community” through five specific discussion topics listed in my previous post. Patient-centered research and PCORI itself is still new enough that there are many questions about what “patient-centered” will look like. My friend Dave deBronkart describes the historical shift with a car analogy: that patients are moving into the front seat of research.

Will PCORI do research that just incorporates more than just a dose of patient opinion? Can PCORI embrace contributions of actual patient communities who know the needs of their constituents which should be pursued in research? Will PCORI be able to demonstrate what I call patient-driven research? My exchanges with PCORI leaders lead me to hope that the answers are yes. But, there will be obstacles to overcome.

Growing a patient-centered PCORI culture


Using a research analogy that we’re all familiar with, I suggest we grow a PCORI culture using the petri dish of the online patient community via social media. Of course, this includes not only the various communities such as the #DOC (diabetes online community) and #rheum (rheumatology), but also many others who work tirelessly toward making health care work better and make sense for all patients. If you have any questions on the value of electronic media as the petri dish of choice, please read Trevor Young’s article. Thank you, (Andrew Spong).


If the current research culture were sufficient, we wouldn’t need PCORI, a new and different way to think about and do health research that will provide answers that patients want and need. The current research culture treats patients as subjects (deliberate double entendre). This weekend’s PCORI workshop spent hour after hour addressing specific ways to break the current mold and incorporate patient input at every stage.

I believe that “incorporating” patient contributions into research is a positive step and regular readers know I’ve advocated that for a long time. However, patient-driven research is truly patient centered because the patient voice is central. Patients work as partners, collaborating on goals for research from the beginning.

What do patients want to study? They know what would improve their lives.

What has previous research missed? Patients know what assumptions need to be questioned.

The dynamics are different. And a different culture will be required.

Here’s a very specific example to make it clear what kind of culture change is needed: I heard a discussion of “how we can train researchers to train patients to do research.” That is still the old approach. What we want to accomplish are collaborative relationships where power is shared. Then, goals are shared, knowledge is shared, and useful novel evidence will emerge.

Don’t worry whether patients know the acronyms of a researcher! The researcher needs to learn the patients’ language too!

I’m quite confident such interactions are possible because I’ve experienced it first-hand.

This must be established as the gold standard for PCORI.


Some really wonderful things are messy to prepare (like homemade turkey pie). I am confident PCORI will make this quantum leap in public research. But it might be messy at times.

A friend of mine was so frustrated with the way her input was treated that she left this weekend’s PCORI workshop before it ended. Regina works successfully with various government offices and she is well respected by patient advocates. Her description sounds like at times the PCORI facilitators were doing things the old way.

This is why we need to grow a new culture. Because we can’t do a brand new thing the old way. We will get the same old results.

I do realize there are many other places where patients’ opinions are not even tolerated. I’ve certainly experienced being patted on the head many times. Do you remember how upset people were that members of FDA advisory committee were drinking, talking, or using their phones during my brief testimony last May?

Kelly Tweeting about PCORI from workshopI recognized some of the social media failures described in Regina’s post and approached a couple of PCORI staff members who worked in that area. As pleasantly as possible, I asked whether anyone knew why tweets to @pcori were not replied to. The answer was, “It’s really hard to answer direct ‘ats’ while tweeting live at a conference.” If you tweet regularly, you’re choking now. If not, here’s an easy analogy: If you send out an invitation to a dinner party and the phone rings, you don’t answer it. Then when a neighbor stops by to ask why you didn’t answer the phone call replying to your invitation, you say, “It’s really hard to answer the phone while planning a dinner party.”

These guys were irritated at my question. I recovered my composure and said in my pleasantest voice, “Is there someone I can talk to about social media?” One of them handed me his card and said, “You can contact me if you have further questions.”

“Ok, thanks.” I walked away feeling angry because it was obvious I didn’t have questions; I had input.

I had blogged about PCORI and posted links on Twitter and Facebook, encouraging many others to watch the webcast and tweet about it. We had greatly extended the reach of PCORI. It was reasonable to expect that people would have their tweets read / answered. Rule number one of social media: It is not a “broadcast,” it is a dialogue. That’s why it’s called “social.”

Why should #Rheum patients care about PCORI research?

1) New approaches are needed for our underserved population. NIH funding levels are dismal for Rheumatoid disease. The Rheumatoid Patient Foundation has examined last year’s NIH spending and confirmed that as in previous years, NIH spent about 1/3 on Rheumatoid disease as it spent on other similar diseases, even with those that have much smaller incidence, often resulting in a 1 to 12 ratio of per-patient spending.

2) Patient input and collaboration will make a powerful difference in in Rheumatoid disease research. I’ll never forget the first time I talked with a researcher who told me how many different things he learned from reading what patients say in this community. Way back then, I wondered: How can they help us if they don’t know?

3) From our beginning, Sherine Gabriel has been one of the heroes to our community since her research directly addresses the mortality of Rheumatoid disease. Sherine is the Chair of the PCORI Methodology Committee and she believes that PCORI can change how medical research is conducted and applied.

Recommended reading

Edit 10/30/12: attribution to Trevor Young for linked article.

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:/rawarrior.com/kelly-young-press/

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11 thoughts on “PCORI – Creating a Culture for Patient-Centered Research

  • October 29, 2012 at 6:20 pm

    Dear Kelly,

    Thank you for succinctly sharing your concerns about communication at this event. I am very glad I am not alone in speaking out.

    ~Regina Holliday

    • October 30, 2012 at 4:33 pm

      I could tell by your tweets that you were becoming more and more concerned about communications. Your own are eloquent and do not need a spyglass to decipher. That kind of issue is just another layer in the maze.

  • October 29, 2012 at 10:41 pm


    It is more about culture than it is about a specific decision or agenda. Had there been a comment time following the board & executives session yesterday at the #PCORI meeting, I was going to speak about culture. How a culture of authentic collaboration can replace the (mostly unspoken) fears many of us still experience about whether PCORI is a wise investment of our energy.
    We believe that embracing consumers/patients (can we just call them people?) at the center of the health research enterprise is the only way for it to be sustainable. It’s not include patients AND do good science. It’s patients at every step SO THAT we do good science.

    My brief remarks when the U.S. Presidential Commission on Bioethics invited me to speak on the subject (consumer participation in health research) was my attempt to overview this needed sea change to a very serious audience (so it contains a little less levity and emotion than is my natural presentation personality):


    Thank you for recording your insights, Kelly. So far it appears that PCORI needs and wants our help. Though I think the leadership might not yet grasp the powerful position they occupy to help cultivate a new culture for the entire future of health research.

  • October 30, 2012 at 3:10 am

    Hi Kelly

    Great post, thank you for the thought leadership around contributing to the development of a patient-centred culture at PCORI.

    Just to offer a correction: the excellent article you link to against my name was actually penned by Trevor Young (@TrevorYoung) whom the piece refers to as ‘a.k.a. blogger the PR Warrior’ — that’s something else you have in common, then! 🙂

    Kind regards


  • October 30, 2012 at 10:21 am

    Kelly, thank you for your presence at the PCORI meeting and for recognizing and voicing patient/advocate conderns. I visited the DC PCORI offices on 2/6/12 to punctuate my willingness to be an engaged patient participant in research on failed implanted medical devices. My early application to participate in the 10/27-28,2012 meeting was met with rejection, so I joined the webinar and Twitter. My question about who was representing the harmed patient with implanted medical devices was met with silence from @PCORI. Joint replacements (orthopedic implants) are the #1 expenditure of Medicare and the IOM on 7/29/11 stated that the FDA 510(k) process does not assure patients that implants are safe and effective. PCORI could follow UDI of implanted devices chronologically and inform patients of devices that are most effective and do not require revision or cause adverse events. This would reduce patient harm. I understand that Joe Selby(PCORI ED) and Jeff Shuruen (FDA director) have had conversations about this. I want to know who is a responsive representative of the harmed patient stakeholder in these discussions. PCORI will not succeed by ignoring engaged patient activists. We do not have the option of quitting!

    • October 31, 2012 at 10:10 am

      Jolene, I appreciate your concern for failed implanted medical devices. I know we have enough concern in our own field of rheumatic diseases, however, by way of comparison-I am aware that there are thousands of cochlear implants that are implanted electronic devices to provide a sensation of hearing, that fail. The FDA has a reporting system for failed devices and a process for recalls, however, the risks of failure is often not explained to people considering the device. Nor have I read any requirements by the FDA to disclose this information to patients. Often, the companies that manufacture the devices are instructed about claims they can make about the approved and intended purpose of the device and how to safety use the device. You have touched on a very important issue for those with rheumatic diseases.

  • October 31, 2012 at 10:02 am

    Hi Kelly. Thanks for this important information about PCORI. I’ll look forward to reading your next blog on the topic.

    What can we, as patients, do ????

  • October 31, 2012 at 2:50 pm

    Reply to Joleen re: joint replacements data:
    Several countries have joint replacement registries that collect timely data about joint replacement devices, surgical procedures and other outcome related data – some countries have had these registries for decades. It was the UK’s national joint replacement registry that became aware of the failure rate of metal on metal hip replants and brought it to the public’s attention, which led to the recall of these devices. In Sweden, data from their national joint replacement registry (created in 1979) has resulted in better outcomes, with a failure rate a third of the US.
    Not until 2009, did steps began in the US, to establish an American Joint Replacement Registry. With the data collected from a national registry, not only will patients safety and outcome improve, but over the years potentially save billions of dollars in health care spending.

  • November 1, 2012 at 10:23 am

    Hi Kelly,
    I read all your postings. I have had RA for 19 yrs. I sent you an email along w/photos of my feet I thought might be of use to your cause. I didn’t get any email back so was just cking in to see if you rec’d it.

    Keep up your good work !

    Let me know if you got my email.

    Kathy Parker

    • November 1, 2012 at 10:29 am

      Kathy, I loved your email & I was just re-reading it this morning! Thank you so much for what you sent!
      I’m so sorry I haven’t replied yet with travelling and preparing for ACR I’m probably more behind than usual. Having no computer for 6 weeks made it even harder. I get hundreds of emails and often get months or weeks behind.

  • Pingback: PCORI Workshop post 1: Kelly Young (@RAWarrior)–e-Patient Dave | Knowledge of Medicine


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