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!



6 thoughts on “Feedback to Feed Forward

  1. Just speaking as someone in grad school for counseling, one thing that I’ve heard repeatedly is the importance of assessments. I would like it to be discussed why mental health screenings are not more actively done at routine doctors appointments. I have never — not once — had an endocrinologist give me the PHQ-9 depression screening, which is a very basic, easy to use screening tool.


  2. Ally, I would like to an understanding of when and how best to treat young patients with a chronic disease. I believe therapy might be used best if it is used early in the young teens and offered thereafter as times get tough.

    Perhaps I am way off, but I would be interested in others experiences.

    I referred your blog to the blog page for the week of August 1, 2016.


    1. Thanks, Rick! We definitely hope to touch on this topic during our panel. I totally agree with you- early intervention can save lots of heartbreak later on!


  3. One of my “pet issues” is traumatic stress among people living with chronic health conditions. The current research and writing on what is considered Medical PTSD (like the DSM’s criteria for PTSD proper) tends to focus on a single traumatic event (i.e. heart attack, cancer/AIDS diagnosis, ICU stay, etc). But there are those of us (and from what I can tell, a lot of us?) with long term health issues that experience multiple traumatic events or lower grade trauma chronically over time, and can be complicated by other non-medical traumatic life events. Long term symptoms consistent with traumatic stress (anxiety, hyper vigilance, flashbacks, nightmares, avoidant behavior, etc) has deeply affected quality of life and shaped how many of the people I talk to interact with and access healthcare, and directly impacts their health. All anecdotal, yes, but it seems to be almost entirely unaccounted for in the literature (as far as I can find), let alone supported and/or treated in a clinical environment. I’ve done a couple episodes of the podcast about medical trauma, and hope to do many more to get people talking about this, recognizing it, and hopefully get people the support and treatment they need for it, and maybe even have a name for it someday?:


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