Take an Ehlers Danlos Survey about Your Experiences as an EDS Patient – Ends Nov. 10
Your input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey by November 10th.
My name is Linda Tao and I am currently studying at Harvard Business School (HBS). I am conducting a research project on a “Multi-disciplinary approach to EDS,” a topic that I am incredibly passionate about because I am an EDS patient and I believe that early diagnosis and correct methodology can significantly improve our quality of life.
Many EDS patients go undiagnosed for multiple years or receive the wrong diagnosis. That is only the start of a journey involving multiple disciplines of medicine as new symptoms and associated diseases/conditions arise. The patient experience is challenging, and the patient is often left to navigate the system on his or her own.
The reason I am reaching out to you is because I am hoping you could provide me with input for the key area of my research: Understanding the patient path to diagnosis and treatment/management (from the patient’s perspective).
You could help in two ways:
- Please complete this survey by Friday, November 10th
- Please post this survey link on your local support group websites, Facebook, etc. Also email it to other EDS patients within your network.
Research goal: A roadmap for EDS patient diagnosis and care
The goal of this research survey is to synthesize the EDS patients’ perspective on the current path to diagnosis and treatment/management in a roadmap. This roadmap can be a tool to assist existing patients by identifying most helpful treatment/management methods or most frequented disciplines of medicine.
I will be coordinating with the various EDS organizations to bring this to physicians with the hopes that this will impact the way physicians and the medical system treat EDS patients. But, for the first phase, I am hoping it will at least provide the necessary information to guide EDS patients through the medical system.
I am fortunate that HBS has a strong healthcare focus with renowned professors like Regina Herzlinger, and I am privileged to have Kevin Sharer (former CEO of a multi-billion dollar pharmaceutical company) as my research supervisor. These mentors are providing guidance and insight into this research, and will help me craft my perspective and action plan.
Thank you for taking the time to participate in this important study on EDS and I look forward to sharing the results.
- Minimal typing – The survey consists of 30 to 38 questions (depending on your unique patient experience) The majority are “check-the-box” answers.
- You may take breaks – At any point in time before completing the survey, you can exit by closing the window. Your incomplete results will be saved automatically and you can re-open your survey through the link.
NOTE: Survey responses are anonymous – Your responses are voluntary and will be confidential. All responses will be compiled together and analyzed as a group. If you are interested in continuing with this research and would like to provide more information, please select that option at the end of the survey.