PCORI, Is It Worth It to Include Patients?

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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 Young. All rights reserved.

This entry was posted on Saturday, November 9th, 2013 at 4:44 am and is filed under If you don't have RA, please read. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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