PCORI, Is It Worth It to Include Patients? | Rheumatoid Arthritis Warrior

PCORI, Is It Worth It to Include Patients?

The patients who read this blog are like dear brothers and sisters to me. I’ve met many in person and it’s like a family reunion. The RAW website and blog obviously speak to others as well – lay and professional caregivers, rheumatology industry, and sometimes the larger patient engagement movement. We’re working hard for change on several fronts.

A bumpy ride into the future of patient-centered medicine

One front of the battle I’ve participated in the past couple of years is the necessary, difficult, and messy shift toward patient-centered medicine. To read a little of our journey to have a voice in rheumatology – click here or dozens of other posts on patient engagement and the e-patient movement – click here.

Patients Included logoA new term Patients Included refers to patient inclusion in medical conferences. See video below for a simple explanation from Lucien Engelen, its originator. The movement is international – a look at the list of sponsors of this Greek Patients’ in POWER Conference shows that the idea of giving weight to patient concerns has taken hold. You many have also noticed the Society for Participatory Medicine (SPM) logo on my site. (NOTE: If you’re on Twitter or you like to lurk, #S4PM is hosting a Tweetchat Saturday 11/9 at 3pm discussing increasing patient involvement in healthcare industry conferences.)

When you watch this video or visit the Greek patients’ site, you are peeking into the future, as it becomes reality. But, traveling into the future is usually a bumpy ride. Some docs don’t even want individual patients to have access to information – much less participate in discussions of policy or research.

Ok, that’s nice Kelly. Where are you going with this?

Kelly and Bear in DC for a PCORI meetingIn spite of my relentless smile, we’ve encountered some bumps along the road to participate in U.S. rheumatology. I want you to know we’ve come pretty far and that we’re still swimming upstream. But, another venture I’ve invested a lot of time and energy supporting is PCORI. PCORI stands for patient centered outcomes research institute; it’s expected to be a more patient-centered (non-governmental) agency than NIH.

Over the past year, I’ve been aware of several challenging discussions – some of them public – regarding the role of patients at PCORI. For a little on that, and an answer to why #rheum patients should care – click here.

For now, I’ll set aside every other discussion I’ve heard from patient advocates about what PCORI needs to do, and focus on a single example of my own. Maybe this example is a symptom that could help diagnose the problem.

Accommodating patients

Several times, I’ve had rather silly discussions with various staff at PCORI (and other organizations) about whether or not I ought to be given any travel accommodation due to physical limitations. This is certainly not limited to PCORI – the Institute of Medicine invited me to speak from their podium last February. And then IOM staff members demanded I submit a note from my doctor confirming my medical condition, in order to receive any accommodation. I refused on these grounds:

1) If my own word about my condition is not trustworthy, why would I be trustworthy enough to stand at the podium or participate in the meeting?

2) Why would my physician’s word be considered more reliable than my own? Isn’t that the type of mentality we were trying to overcome at the very meeting where I was invited to speak?

3) Why would they think it is appropriate to ask me to forfeit my HIPPA rights and give up the identity of my personal physician?

4) They would never consider insulting a physician-speaker with such demands if she required physical assistance. The request was made solely based on the fact that my “qualification” for speaking is that I’m a patient.

5) In many of the articles I’ve written, I’ve been vulnerable to discuss my physical struggles, hoping that making them public would help others.

What does working with patients mean? Is it important enough to change how we operate?

I’m getting the run-around again on this issue with PCORI. I don’t know how the current standoff will end or whether I’ll attend the upcoming meeting. I made polite requests for accommodation through every channel available, except one: phone a friend. But not everyone has friends in high places, so I didn’t play that card. PCORI has run around this same mulberry bush too many times – it, as an institution, needs to get this right.

Is working with patients worth it? PCORI needs to resolve that deep in the soul of the organization, and insist that the answer permeate every policy and the training of every employee they hire, and govern every encounter with patients.

What do you think? How important is it that patients are included?

POSTBLOG: I didn’t want to make this post longer, so two key things are left out that have been dealt with elsewhere on RAW: why I’d need accommodations, and details about the importance of patient involvement in research. The search box works great if you need more information.

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

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6 thoughts on “PCORI, Is It Worth It to Include Patients?

  • November 9, 2013 at 9:31 am

    First, ‘needing accommodations’ is an answer, not an explanation. You either need them or you don’t – and a person or organization requiring explanation from a physician is absurd.

    Second, I am no where near as involved as you with these organizations, but I can’t help but wonder if the healthcare industry – doctors, nurses, healthcare management – are in some way intimidated or afraid of patient involvment. They say they want patients involved, but their actions don’t necessarily confirm that – they want patients involved on their terms.

    Looking at PCORI’s Mission statement – I would ask how the research is guided by patients. And as for their Vision – I would want to know who interprets the research. Look at RPF – those collecting and assessing the information have a true stake in the game and their perspective is not clouded, they live the experience.

    When looking at PCORI’s Board of Governors, fourteen of the twenty-one individuals are doctors/nurse, two are attorneys and the other five are in healthcare management. Where is there representation by a ‘patient’?

    My favorite reference is a vet specialist whose tech told me in response to asking a question “you people need to stop reading on the internet, you will never know as much as the vet, you’re just wasting his time.”

    • November 9, 2013 at 12:05 pm

      Amen, Donna!! (p.s. I love –well, you know what I mean!– your vet story too!)

  • November 9, 2013 at 10:01 am

    Kelly, I cut out an article in last night’s issue of our local paper, and I’m going to get the link and e-mail it to you. When I saw it, I was thinking that the woman in the headline could be any RA patient–and especially you because she, too, is a patient advocate for another disease! I had to jot you this quick note, though, because I wanted you to be a bit “comforted” to know that this “importance of patient input” theory is shared by others with other diseases as well. Perhaps our strength in numbers will move this movement along faster! Your points about not being treated the same as any other speaker are so well stated, and I am incensed that the powers that be could be so reluctant to handle this speaker situation in a more appropriate manner! Grrrr………..!

  • November 9, 2013 at 11:16 pm

    For some of these, I think the patient involvement they want is be involved by following doctor’s orders. ONLY.
    Compliance, not questions.

  • November 13, 2013 at 9:07 pm

    Thank you very much for this post. Hadn’t thought of a request for “proof” and am so glad you have already come up with the proper responses — I will memorize! Am just researching the whole existing patient advocate issue since I’m going to be writing about sleep disorders — although I realize the underlying theme of just about everything I’m reading and thinking is related to whether or not sick people are listened to and heard by their “healers.”

    I have passed on to a friend w/RA the link to your blog, and I look forward to reading more of your work.

    All best wishes to you, and I love the fountain pen spear!

  • November 14, 2013 at 10:18 pm

    Sometimes doctors want us to be seem for them to make money and not be heard. My doctor will listen to me which i thank him for. I had bad swelling at times so i rolled my pants up an used my smart phone carried in pictures. Helped a bunch.


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