Collaboration on Endometriosis Care Pathway Project

[Alainazubair]

Hi everyone,

My name is Alaina Zubair, and I am currently pursuing an MSc in Healthcare and Design at Imperial College London. As an endometriosis patient myself, I am deeply passionate about improving the care pathway for those of us affected by this condition.

I am working on my dissertation, which aims to design and create a peer-reviewed consensus statement to establish a comprehensive and effective pathway of care for endometriosis. To make this project as impactful and practical as possible, I am seeking insights and experiences from fellow endometriosis warriors.

How You Can Help:

1. Share Your Story

2. Participate in Research through interviews and co-design workshops

3. Collaborate on Solutions

If you're willing to share your experiences and contribute to this important research, please comment below or send me a direct message and we can speak about this further. Your participation can make a significant difference in improving the quality of care for all of us living with endometriosis.

Thank you for your time and support. I look forward to connecting with many of you and working together to make a meaningful change!

Warm regards,

Alaina Zubair

MSc Healthcare and Design

Imperial College London

[FrecklesandFlowers]

Hi Alaina, it's great to see some research being done! I just have a few questions and I'm asking them here in case others were wondering the same thing:

1. Do we have to have an actual diagnosis to participate, or can we be going through the process of being diagnosed?

2. Are the interviews and co-design workshops in person or online? Do we need to live in/near London?

3. What kind of experiences will you want to hear about e.g. healthcare, diagnosis, pain etc.?

[Alainazubair in reply to FrecklesandFlowers]

Hi there,

Thank you for your very relevant questions!

1. As of now, a diagnosis is required for participation. However, I would also love to hear from anyone who is in the process of receiving a diagnosis, as the inclusion criteria may change.

2. I am aiming for in-person workshops, but depending on the participants' locations and feasibility to travel, I will consider online interviews and workshops.

3. You can share anything you are comfortable with! Questions will be based around symptom history, the process of diagnosis, and the challenges faced by the individual. However, it is entirely up to you what information you wish to share or withhold. All participations and information would be anonymised.

I am currently in the process of creating a protocol and getting ethics approval. I will contact those interested once that is done, hopefully by September if not earlier. This will include all the official information & documentation needed to help you decide if you’d like to participate. However, all questions are welcome prior to that!

Best regards,

Alaina

[RosaVibes]

I have sent you a DM x

[Ps-endo]

Hi Alaina, this is great what you’re doing and I’d love to help if I can!xx

[shadyshaderton]

Happy to help