Making the Invisible Visible: Using Patient-Reported Outcomes in Research

In our first episode, we will be exploring how the lived experience of someone managing a condition like rheumatoid arthritis can systematically be documented via the use of what we call Patient Reported Outcome Measures.

Joining us to explore this topic are Dr. Susan Goodman, Professor of Clinical Medicine at Weill Cornell Medicine, Director of the Integrative Rheumatology and Orthopedics Center of Excellence, and Medical Chief and Research Director of the Combined Arthritis Program Hospital for Special Surgery, and Shelley Fritz, who is an educator and patient advocate who lives with rheumatoid arthritis and several co-morbidities.

This podcast is a co-production by the Global Healthy Living Foundation and HCP Live. 

Additional Resources:
(1.) https://ard.bmj.com/content/71/11/1855.long
Bartlett 2012 “Identifying core domains to assess flare in rheumatoid arthritis: an OMERACT international patient and provider combined Delphi consensus” from the OMERACT RA Flare Working Group where patients identified fatigue as an important concern
(2.) https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-019-2076-7
Gavigan 2020 – in particular look at Figure 6 – that’s really the one related to PROs, including RAPID3 and how well they measure patients’ off the cuff response about how they are feeling
(3.) https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-021-02430-0
Nowell 2021 “Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower”
(4.) https://pubmed.ncbi.nlm.nih.gov/30927515/
Yun 2020 – this was a good study of ArthritisPower data to show how you can predict certain PROs using other PROs, meaning you don’t have to always ask patients every single measure, so it can save some time and burden on patients responding to questions

Learn more at ghlf.org/relatable-rheumatology/

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