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How to select appropriate patient-reported outcome measures and advocate for these to researchers

As patient groups and advocates for individuals living with rare diseases, you understand the unique challenges your community faces. Research in rare diseases does not always adequately reflect these unique challenges, or address the variety of personal experience in life and treatment. This course equips you with knowledge about Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) – powerful tools to amplify patient voices and ensure research prioritises the needs of those with rare conditions.

With thanks to:

Tara Walker, Medical writer at Word Monster, who generously provided her expertise and pro-bono support to create this course for patient groups.

My name is Tara Walker, and I am passionate about communicating medical information in a clear and accessible way for everyone. Writing this e-module has been an absolute pleasure and I feel privileged to help the rare disease community understand and advocate for patient-reported outcomes and patient-reported outcome measures.

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My path to medical writing began with a deep fascination for language and the human brain. With a background in language teaching, I spent a lot of time communicating complex information and ensuring understanding. My academic career focused on inclusion and clinical neuropsychology, where I studied rare neurological diseases. The patient stories ignited a passion to bridge the gap between complex scientific discoveries and the people they could impact. Now, by combining my scientific background, teaching experience, and medical writing skills, I can contribute to raising awareness and empowering patients to advocate for their health. I believe that clear communication is a cornerstone of progress, and I’m excited to be part of the solution.

With thanks to the Funders of The Empowerment Programme 2024

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Resource type

Course



Skill level

Intermediate



Duration

Est. 90 minutes



Last updated

July 2024



Resource type

Course



Skill level

Intermediate



Duration

Est. 90 minutes



Last updated

July 2024

What will you learn in this course?

What patient-reported outcomes and patient-reported outcome measures are

How to decide on the most relevant patient-reported outcome measures for your patients

How to discuss patient-reported outcome measures with researchers, and advocate for the best ones for your patient community

Why patient-reported outcomes and patient-reported outcome measures are important in rare disease research

Who is this course for?

This course is designed for patient groups and patient advocates looking to understand more about patient-reported outcome measures in research, and what they can do to help their patient community access the most relevant and beneficial ones for them.