Barriers to Patient Engagement

I never said I was an artist y’all.

As a chronic illness advocate type person, I talk an awful lot about being engaged in your care. There are, unfortunately, a lot of barriers that can keep someone from doing so. This post is to see what barriers exist. By identifying them, we can hopefully move to a point where we can work on getting rid of them to get everyone over to engaged patient land.

Here are, in no important order and not exhaustive whatsoever, some of those barriers:

  • Authoritarian or paternalistic doctors
    • Some doctors do not want to engage you in your care which sucks
  • Denial about illness or necessity for medical care
    • If you don’t think you need treatment, why would you really access health care?
  • Presumptions about health care
    • White coat syndrome – we don’t question the degree
    • Worried about being labeled (troublesome, drug seeker, difficult, etc)
  • Access to care
    • If you live in a rural area and physically can’t get to the doctor, you can’t engage in your care
    • Same if you can’t get child care, get off work, etc
  • Education level
    • It’s been shown in several studies that people with higher education and socioeconomic status engage in their care more
    • Even more than this, you have to be educated about your illnesses specifically
      • You’re already an expert on your body so learn what it’s doing wrong
  • Racial disparity
    • This could mean between anyone in the health care process or the system and the patient
    • This can be especially true in larger cities 
  • Sexuality
    • If your doctor doesn’t agree with your sexual orientation, it may be hard to bring up quality of life issues
  • Gender
    • It’s honestly a travesty that more women wind up with autoimmune disease because women (especially of the younger ages) are often treated as hysterical when they report pain, etc
  • Age
    • If you’re young, you may be dismissed as being silly/hysterical/etc 
    • If you’re old, doctors may not give you the best treatment due to you insurance or thinking you may not be worth the time
  • Cognitive function
    • If you aren’t neurotypical or you’re having a bad brain fog day, it’s not only sometimes more difficult to engage but also to truly be heard
  • Background (ie abuse)
    • I’ve found that it can be hard to handle new providers if they don’t know your background
    • Something like abuse or PTSD should be brought up right away
  • Terminology used
    • Sometimes I think we all feel like we need a dictionary to be in an appointment
  • Experience in HC setting
    • If you’ve had an awful experience with health care, especially a particular system that you’re still in, you’re not going to be as inclined to utilize their facilities
  • The perfect patient is passive
    • We get this idea in our heads that the perfect patient is passive and complies 100% with what the doctor wants us to do
  • Undervaluing own opinions
    • This is really a part of the white coat syndrome
    • We don’t feel qualified to question or make decisions in our care
  • Insurance
    • Insurances often only cover a certain number of visits, especially with specialists, so how do you get the care you need and stay engaged?
What are some barriers you’ve seen or dealt with?
I hope that you’ll join me on my MedX journey Sept 24-27! I’ll be live tweeting the whole time so hit me up @kirstie_schultz, catch the live streams at the Medicine X website, and join in the conversations using the tag #MedX.

You may also like...


  1. I would like to add a current and/or past mental health issues. As a mental health provider and as a person with mental illness I and my clients often have to dance around our mental health issues in order to be treated seriously.

    I was once even started on the path to be certed process of involuntary psych treatment) because I was depressed (reaction to a med!) and was honest about my history of severe depression and PTSD 10 years ago! I had also Neuro insist my migraines were due to stress and my vertigo wasn't real, even though I bomb basic Neuro/ENT in office vestibular tests and have confirmed Ménière's disease. What's even more devastating about this is that it turned out it is the slow death of my vestibular system that was triggering my migraines.

    She thought she had me all figured out after she learned about my decade old stint with severe mental illness. Instead I was misdiagnosed (which with my migraine and aura type can be lethal), and the actual trigger of my chronic migraines was completely missed.

    It is the rare doctor that I can be honest with. My current neurologist and gynecologist are super rare and amazing in not judging me due to my mental health history.

    As a mental health provider a lot of my time is spent empowering and advocating for clients to get appropriate healthcare and be taken seriously by their medical doctors.

    My story is far from the only one this.

  2. Definitely a great one to add! That is just awful what you've experienced though 🙁 *hugs*

Comments are closed.