Frustrations on the lack of patient inclusion

Today I saw two things that spurred this post.

One is that the American College of Rheumatology has, once again, refused to create a registration section for patients – let alone ideas surrounding implementation of scholarships, etc.

In the last few years, some patients have been able to go and have not been treated well at all at this event FOR RHEUMATOLOGY PROFESSIONALS. Some people had off-color remarks made about their assistive devices even. It was bad.

It’s really sad especially as it seems that the more patients I speak with, the more often the problems they have in engaging in their own healthcare come from specialty docs and very specifically from rheumatology offices.

I had a number of other complaints, including the lack of programming last year on dealing with younger rheumatic patients. This is frustrating as I’ve had conversations with their VP of education who told me she’d get back to me and, clearly, has kind of blown me off on this. Eventually I may post my original email with suggestions to her on here. It would be worth a look at least.

The other is that a doctor (little d not physician) on Twitter said the following:

@charlesornstein @RAdamsDudleyMD “patients are experts in their own condition” ? Give me a break.

— Niam Yaraghi (@niamyaraghi) June 17, 2015

I learned of these two things within seconds of each other, which of course prompted a Twitter rant.

One of Niam’s arguments is that he has a PhD which makes him an expert in his field – which happens to involve health care IT by the way.


It was fun to take a look at the tweets being hurled at this man on his lunch break. I felt like I needed some popcorn.

Here, for your enjoyment, is my twitter rant plus some:

It’s really unfortunate when you have people who work in any aspect of health care and do not give one crap about the patient’s perspective or experience. The amount of people working in medicine with this viewpoint literally sickens me, because it leads to less action to remedy issues the patients are facing as doctors or other medical professionals downplay these issues – if they listen at all.

Would it make a difference if patients were given some sort of certification, since some seem to think a PhD or other high degree makes them more important or better suited to be an expert? This raises all sorts of problems and often eliminates those who need

Here’s my biggest problem – patients know their bodies more than anyone else ever could. We know when something is off and feels dangerously so. It took a month, for example, before my abscess was diagnosed as so and treated – AFTER my primary care doc at the time laughed literally in my face and told me it was a pimple and to continue my Enbrel shots.

We also know your systems or offices better than you ever could. We encounter every person in the clinic from registration/check-in to reception to your MAs and RNs/NPs to you. The NP at my last rheumatology office was the only reason I stayed. She cared enough to really talk with me, to spend the time with me that I needed even if it meant staying late. THAT is the type of care patients with multiple chronic illnesses need.

I realize that I’m lucky in working for a set of docs who, generally, appreciate and value the patient voice and experience. Our boss doc is amazing and I cannot say enough about the things she’s trying to accomplish in the community and for our patients. More than that, she asks me for my opinion on these things because I am a patient – but I also know these systems.

If you’re not a doctor who truly values patient input, then you are not truly in it to care for us. That would be like having a conversation about gender equality or abortion or reproductive rights without any women…

Organizations and individuals working in health care have GOT to stop with the paternalistic view of doctor knows best. I hate to break it to you but that isn’t always the case. If I listened to that PCP and injected my biologic, I could’ve wound up in the hospital or worse.

If you work in health care or know someone who does, I challenge you to connect with patients in your area. Ask them for opinions on the changes you’re making or the systems you use or the employees you have are working/will work for them. Ask patients about their daily lives or events in their lives, because those things could help show why their BP is still high or other things.

You cannot work in health care without valuing the patient period. You need to include patients as well – whether you’re in IT or a doc or a scheduler or a national organization. If you can’t bring them in utilizing empathy or other skills imperative in HC, then maybe it’s time for you to retire or change jobs.

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1 Comment

  1. I went through a lifetime of infections before finally getting diagnosed with an immune deficiency, all because doctors wouldn't listen to me and blame it on diabetes. I totally agree that maybe if doctors stopped and listened more then more would be accomplished. I get so frustrated when doctors argue with me, even after going into their office with journal articles in hand, highlighted and annotated with my own research notes in them.

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