MGFA Conference Take-Aways: Becoming a Take-Charge Patient

At the 2017 MGFA conference a panel consisting of Denise Trombly, Kim Eldridge, Mike Ursic, and Nancy Law presented “Becoming a “Take Charge” Patient: A Proactive Approach to Managing Your Health Care and MG.

Below are the highlights I took away from the presentation. Check out to view the full presentation and find more Myasthenia Gravis info!

In a case study that looked at patient vs physician perspectives there were some interesting disparities. While both doctors and patients agreed that the time allotted for appointments was inadequate, they disagreed on some fundamental measures of what made an appointment and continued care satisfactory.

Physicians assumed patients were more comfortable discussing all symptoms than they actually were. No one wants to be thought of as a complainer, and that’s often what the charts’ wording reflects. Patient is complaining of ___. Patients don’t want to come across as difficult and may withhold some concerns.

Physicians also tend to mark a patient’s progress by what the data they collect reflects. Patients, on the other hand, care more about the reality of what they can do on a day to day basis and how they feel.

When asked what the most important patient resource, many physicians referenced large organizations, while many patients mentioned social media.

The presenters acknowledged that it can be a delicate balance between taking charge of your health and advocating for yourself and being a difficult patient. Even so, “nobody cares more about you and your health than you. You need to invest in your health.”

Not all physicians are going to be great communicators. Communication isn’t really the focus in med school, and studies have shown that many physicians assume themselves to be good communicators…even when that isn’t reflected in their patients’ feedback.

So what can you do as a patient? This is the list presented at the conference:

  • Learn how health care systems work
  • Take time to search for the right provider
  • Treat providers and staff with courtesy and respect
  • Prepare for appointments
  • Use appointment time wisely
  • Create a support system
  • Use the internet—judiciously
  • Evaluate information—and sources
  • Set reasonable expectations
  • Create a collaborative relationship
  • Adhere to physician direction –and be upfront if/when you’re not
  • Don’t be afraid to seek a second opinion
  • Don’t be afraid to make changes when a relationship isn’t working
  • Create and share legal health documents

Some wisdom shared by the panelists?

  • If you begin to act like a confident person, you’ll start to feel confident.
  • Take somebody with you to appointments to help you advocate.
  • Know what questions you want to ask your doctor in advance and prioritize them so you make sure to ask the important ones first.
  • It’s alright to express what you don’t like, just do it the right way.
  • Knowledge is power.
  • Listen to your body and rest when you need to.
  • Don’t be a patient patient… the squeaky wheel gets the grease!

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