Patient Centered Medical Home: Will Redesign in Healthcare Hurt Rheumatology Patients?

Most posts on this blog are written with patients in mind. This post is an exception.  I’d like to specifically address this post to those who work in medicine or healthcare design.

The call to make health care more patient centered

Patient centered medical home post birdhouse

Back in January, I brought my readers a treat, a video of a talk by Bridget Duffy, the Chief Patient Experience Officer for the Cleveland Clinic. Dr. Duffy is an amazing speaker who talks about creating a healing environment of compassion and respect in healthcare. Her career is devoted to changing the “culture of fear and intimidation in medicine.”

Near the end of the video, Dr. Duffy describes something called a Code Lavender. As part of learning to “treat a patient as a whole human being,” pagers are sent the lavender code indicating what blogger Nick Dawson describes as emotional arrest. Througout the hospital, prayers and positive intentions are directed toward the particular individual in code lavender who may also be a doctor or a nurse.

Patient-centered health care redesign must increase treatment for rheumatology patients

That code lavender sounds nice. No really, doesn’t it sound nice? So why haven’t I ever advocated anything like that here on the blog? Why don’t we talk very much about how insensitive and unsympathetic many in the medical profession are about Rheumatoid Arthritis?

There’s a very good reason. Those of us with RA would like compassion and gentle treatment at least as much as the next patient. Often, we are handled too roughly by people who don’t seem to accept that every joint is tender even if they don’t look sick. However, we focus on an even more critical need at this point in time. We need Rheumatoid Arthritis to be properly diagnosed and treated.

As far I can tell, one of the easiest ways to increase early diagnosis of RA is for doctors to listen to patients. As I wrote in January in my response to Dr. Bridget Duffy’s talk, “Diagnosis can depend upon the doctor’s willingness and ability to listen to a patient’s specific (symptom) description and history. Blood test results tend to be normal for a considerable percentage of patients, especially in the early stages of Rheumatoid Arthritis.”

Sure, we’d like to be treated nicely. But most of all we just want to be treated.

Patient centered solutions in healthcare redesign may be condition specific

I love to participate in discussions about things like the FDA Hearings on Social Media,  social media in healthcare, and making healthcare more patient-centered. I’m not an expert in new technology or hospital design or even social media. But I know more than I wish I did about Rheumatoid Arthritis and what RA patients need.

One thing I’d like to contribute to those important discussions is that some solutions may need to be more disease specific. For example, there is a popular concept in healthcare design called the Patient Centered Medical Home. In the US apparently, it has been successful in pediatrics. One facet of it is that primary care doctors are used to manage chronic diseases like Rheumatoid Arthritis, reducing patients’ contact with specialists.

Have a look at the recent issue of The Rheumatologist magazine where the Patient Centered Medical Home is discussed in more detail on page 16. Doctors Harrington and Newman believe that reducing contact with rheumatologists would be bad news for RA patients. As patients, we are struggling for more specialized expertise in diagnosis and aggressiveness in treatment – not less. Since Rheumatoid Arthritis is a heterogeneous disease, the future of medication options is also going to be highly specialized.

Note: Yesterday, I watched another video of Bridget Duffy that brought laughter and tears. It’s posted on our Bulletin Board when you have time to watch.

Related posts:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

6 thoughts on “Patient Centered Medical Home: Will Redesign in Healthcare Hurt Rheumatology Patients?

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  • August 3, 2010 at 2:58 pm
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    I have concern about having a GP manage cases. My GP always warns me off of the biological meds, he has no experience with them and is convinced they will cause cancer. When you are getting new “state of the art” treatments a GP just isn’t up to speed for rheumatology. A rheumatologist who has hundreds of patients on these medications isn’t afraid of them, they embrace them. In fact, my GP had never even heard of the type of RA I have – he asked me what it was after I got my diagnosis.

    Reply
    • August 3, 2010 at 7:25 pm
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      I agree. My GP is a wonderful person who is responsive to various other needs I have had, but does not know about these RA issues or RA medicines & I’ve taught him a lot about it. I needed to try several rheum specialists to find one that I thought was sharp & on top of things & didn’t tell me anything that I knew to be false. Soooo, I’ll personally always want the smartest specialist I can find.

      You know what ? Come to think of it, I’ve gone “around” the pediatrician to get things my kids have needed from a specialist dozens of times – glasses, hearing aids, surgeries… It doesn’t seem like it has patients’ best interests at the center of it. Kind of like the HMO where the gatekeeper decides what care you get. I will fight to be my own gatekeeper from now on.

      Reply
  • September 19, 2014 at 2:51 am
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    I was suggested this blog by my cousin. I am not sure whether this post is written by him as no one else know such detailed about my difficulty. You are incredible! Thanks!

    Reply
  • September 22, 2014 at 11:57 pm
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    Having read this I thought it was really enlightening. I appreciate you finding the time and energy to put this short article together. I once again find myself personally spending way too much time both reading and commenting. But so what, it was still worthwhile!

    Reply
  • September 28, 2014 at 4:15 am
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    This is the right site for everyone who wishes to find out about this topic. You realize a whole lot its almost tough to argue with you (not that I really would want to…HaHa). You certainly put a new spin on a topic which has been discussed for many years. Excellent stuff, just great!

    Reply

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