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
  • THIS IS SO WRONG OMG
• 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?