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

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:

• All posts on this blog labeled health care social media
• What Makes Diagnosing Rheumatoid Arthritis So Difficult?
• E-patients’ Role in Healthcare Social Media: Do Doctors Hate Blogs?
• This doc likes social media: Uncommon Chat with a Rheumatoid Arthritis Specialist
• The Fake Patient (fPatient) & Patient Engagement on Drug Companies’ Sites
• Dear Bridget Duffy from a Rheumatoid Arthritis Patient