Patient Involvement is Key to EDS Success

Jun 22, 2021 | Samantha Campbell | @samanthacmaa


Do you ever wonder if your ideas could make a difference?

As part of the development process in treating patients with EDS, we invited a cohort of hEDS and HSD patients to a targeted focus group session. The objective of the focus group was to receive and utilize feedback from a representative group that included patients from diverse demographic backgrounds. Patients provided comments, recommendations, and concerns identifying several major themes. These included obtaining the right care at the right time, access to multidisciplinary, holistic, and coordinated care, and additional educational resources.

We continue to meet with a select group of patients who volunteered to form an EDS patient advisory group. Meetings occur monthly and focus on areas of improvement to meet the needs of all patients. The Clinic multi-disciplinary team members also meet regularly with an EDS Provider Forum consisting of clinical and research stakeholders involved in treating patients who come through the EDS Clinic to improve understanding of this complex condition and enhance the clinical pathways available to patients.

Here's what focus group participants shared with about their experience.

“As an EDS patient and advocate, I view the EDS Clinic as a resource for local doctors but also for me and for those I support as a place to go to get answers and help.” -KA

My experience at the EDS clinic was life changing. I was so blown-away at the preparation, brilliancy and intelligence, communication skills and genuine care for the patient of the clinic providers that in just a few weeks I made major changes to my life - activities, priorities, scheduling, etc. – as they had suggested (something that I would have never thought possible!). What strikes me the most is the doctors’ ability to see things in an integrated way, and care for my wellness more than for my health.” -MS

What ideas might you want to share with us?


Interested in more newsfeed posts like this? Go to the Ehlers-Danlos Syndrome blog.

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