MTM-CNM Family Connection
  • Home
  • About
    • About MTM/CNM
    • About Us
    • Contact
    • Newsletters
    • Traveling Turtle
  • Family Conference
    • 2019
    • Previous Conferences >
      • 2017
      • 2015
      • 2013
      • 2011
      • 2009
  • Resources
  • Research
    • Research Studies
    • Drug Approval Overview
    • Selected Publications
  • Fundraising
  • Blog


Our Blog

Considering Complex Spinal Surgery

10/29/2018

1 Comment

 
Picture
Erin Ward, President of MTM-CNM Family Connection, has been serving as a Parent Partner for the Boston Children’s Hospital process design team participating in an Agency for Healthcare Research and Quality-sponsored, Harvard Chan School of Public Health-led Engineering High Reliability Learning Lab, since the program’s inception in 2015.  The team’s work has focused on improving the process for complex spine surgery.  Today, the team's shared Decision-Making Guide and patient-centered video series has been released by the project’s collaborative partners at Courageous Parents Network.  Erin shares more in the blog post below:

Picture
In 2014, Will had major spinal surgery and although he rocked the surgery, the process to get there seemed so much more challenging and complex then it should be.  Much of the coordination to communicate perioperatively with Will’s multiple specialists was on us, his parents.  At the time I had been working with a complex care specialist on another project, and began to share the challenges we experienced.  He listened and heard the complexities of the process, and he believed that as a universal care system “we” could do better! Dr. Jay Berry was in the process of applying for a multi-institutional grant, which came to be known as “Engineering High Reliability Learning Labs" (EHRLL).  Under this grant, medical entities including our team from Boston Children’s Hospital would collaborate with Harvard’s Chan School of Public Health and Northeastern University’s Health Systems Engineering team to create better care processes using systems engineering principles, aiming to improve the quality of health delivery. 
 
Since 2015, our team has been working to improve the process that patients experience when considering, and undergoing, major spine surgery.  There are many learnings that have developed out of this work.  Today, the team's shared Decision-Making Guide, that we hope may be helpful for patients and families who are considering spinal surgery, was released by our collaborating partners at Courageous Parents Network (CPN).  CPN has also worked with our Boston Children’s Hospital team to develop a series of videos that share conversations about the challenges and considerations of complex spine surgery from the perspectives of a parent, complex care physician, and surgeon.  We hope that the conversations captured will allow patients and families facing a potential surgery an opportunity to consider how to go through this complex decision making process.  We encourage families to partner with their providers and work to develop a personalized care pathway that will be best for their child and family.  Please feel free to share with those that might benefit and also please share any feedback as the shared Decision-Making Guide is a living guide, intended to be updated and modified to best serve families and medical professionals partnering with them to provide optimal care. 

1 Comment
Georgia Gloryholes link
11/1/2022 06:51:09 am

Thank you for beeing you

Reply



Leave a Reply.

    MTM-CNM Family Connection's Blog

    Sharing information, resources, updates, and thoughts on various topics of interest to the MTM-CNM community.

    Archives

    July 2020
    November 2019
    October 2019
    July 2019
    June 2019
    May 2019
    February 2019
    January 2019
    November 2018
    October 2018
    July 2017
    March 2017
    November 2016
    October 2016

    Categories

    All
    Patient Advocacy
    Patient Care
    RARE Disease Community
    Research News

    RSS Feed

Picture
Copyright 2014-2022 MTM-CNM Family Connection, Inc 
Admin
  • Home
  • About
    • About MTM/CNM
    • About Us
    • Contact
    • Newsletters
    • Traveling Turtle
  • Family Conference
    • 2019
    • Previous Conferences >
      • 2017
      • 2015
      • 2013
      • 2011
      • 2009
  • Resources
  • Research
    • Research Studies
    • Drug Approval Overview
    • Selected Publications
  • Fundraising
  • Blog