ePatients

Feedback to Feed Forward

September will be here before we know it, and I am excited to share that I will be returning to Stanford Medicine X (#MedX) as a junior member of the ePatient advisory panel.  Additionally, I will be presenting in a panel entitled “Ah-Ha! moments in mental health and chronic disease management” alongside wonderful advocates Alan Brewington, Kristin Coppens, Danielle Edges, and Mark Freeman, and moderated by rockstar Charlie Blotner.

Accepted MedX 2016 presentations can be found here.  Our abstract includes the following information, some of which is quoted below:

“Mental health and chronic disease management are often interwoven topics in science. But what about the human side of the story? Whether or not individuals meet the diagnostic criteria for mental diagnoses, we all long for optimal mental and physical health to attain good quality of life.

How do we put a personal face to the feelings that hypoglycemia, or chronic pain, or other physical health struggles invoke in terms of our emotions? What moments have changed the way we think about mental health and chronic disease, and how can we encourage these same poignant healthcare interactions in the lives of others?

This panel will explore just how vital this conversation is in chronic disease and mental health management by featuring multifaceted patient, caregiver, and mental health advocate perspectives. In order to facilitate this conversation for all patients, we must raise the topic from the very source: ePatients themselves. Therefore, this panel is ePatient-centric in its selection of presenters. We will identify crucial learning moments in understanding our own mental health, while promoting a transparent discussion that remains much-needed in humanizing healthcare.

…Ah-Ha! moments relevant to the following topics will be discussed:

  • Why the words we use matter so much
  • Barriers to care
  • Continuum of “before, during, and after” mental health becomes a focus of care management; early intervention in normalizing this conversation
  • Caregiver resources and how to talk to children/teens about difficult health topics
  • Managing multiple diagnoses
  • Curtailing advocacy “burnout””

Source (linked here): MedX 2016 accepted presentations, “Ah-Ha! moments in mental health and chronic disease management.”

In preparation for our upcoming panel, we wanted to reach out to our respective advocacy communities to see if there are pertinent points that you would like us to consider and to possibly discuss in the panel (time-permitting).  I recently wrote about the diabetic online community (#doc) needing to hear more from “The Whole” in diabetes, and this is a good platform by which to reflect upon feedback from multiple sources.  While one presentation cannot represent all affected by health conditions, we can try our best to integrate community viewpoints into what we discuss.

With that said, if you have ideas about mental health and chronic disease of any type, please feel free to contact us.  We would love to listen to your perspectives!  My contact information can be found here, or feel free to comment on this post if you are comfortable sharing your thoughts publicly.

Thanks for your support!  We are so looking forward to MedX!

 

Try.

Try.

Dictionary.com says

“to attempt to do or accomplish”

“to put to a severe test”

“subject to strain, as of endurance, patience, affliction”

“to attempt to open (a door, window, etc.) in order to find out whether it is locked: Try all the doors before leaving.”

Fear.

Dictionary.com says

“the feeling or condition of being afraid.”

I fear spiders.

I fear insulin- too much and too little and not finding that happy medium dose.

I fear carbohydrates- too many or too few.

My biggest fear, though, is misconception.

If something “bad” ever happens diabetes-wise, others might think that I didn’t try.

This is why,

despite the fears,

brush the spider off the car windshield.

Say a prayer and take the insulin.

Eat the carbohydrates.

Treat the lows and the highs.

Until there’s a cure, we must

“Try all the doors before leaving.”

Try. 

Short and Sweet

If you have wanted to get more involved with the diabetic online community (#doc) but are not quite sure how to do so, today is a good day to dive right in.  We don’t bite!

Use the hash tag #IWishPeopleKnewThatDiabetes (brought to us by Kelly @diabetesalish) to document what you want others to understand about diabetes.  Advocacy starts with the first tweet, Facebook post, blog writing session, and so forth.  And advocacy can happen anytime, not just today. We’d love to have you onboard!

Speak Your Mind

I’m doing some research for one of my grad classes with a focus on how the Affordable Care Act impacts quality of care.  While there are objective measures of quality such as hospital reimbursement rates, I believe the patient perspective is invaluable as well.  Quality, then, must be addressed and defined from the various view points of those in the health care system.

I would like to gather some patient responses prior to my presentation.  Personally identifiable information will not be included, rather, the aggregate of the information provided to me will be summarized for my class.

So, if you have an opinion on how quality affects your health care, please comment here or feel free to contact me over the next few weeks.

What would you like to see change in terms of quality of care?

Do you think that the way your health care providers measure quality is an adequate representation of the type of care you receive?

Have you noticed changes- good or bad- in your quality of care since the passage of the Affordable Care Act?

Is your health care delivery environment upfront about how they plan to improve the quality of your care?

These are just starting points, but any and all information provided will be useful and is greatly appreciated.

Thanks for your help!