Patient Preferences to Value Health Outcomes for RCT's Working Group

About

Researchers, patients, clinicians and policy-makers need to make certain trade-offs when making treatment decisions. These trade-offs include treatment safety, cost, duration, and effectiveness. Understanding patient preferences for these trade-offs is critical to making sure that the evidence we generate and use is relevant for the patients and physicians who have to make these choices every day.
Our work will provide foundational knowledge regarding the most appropriate and feasible methods researchers can use to measure patient preferences to inform clinical trial design and interpretation. We will first review the published literature to understand how and when these methods may be used. We will then engage relevant stakeholders including patients, doctors and researchers to understand their perspectives. Through our OMERACT Special Interests Group, we will work with relevant stakeholders, and use our research to develop a ‘handbook’ on how and when to use these methods. This handbook will be used to help walk researchers through these methods and will form the basis for future research to use these methods in real-world applications. It is important to do this research because it will support the use of patient values when designing clinical trials. This will help ensure that evidence on treatments applies to the patients who will be using them. Though we are working within rheumatology with this group, our results could be applicable to other specialties.

Current Stage in the OMERACT Process

This group is studying how to integrate patient preferences into clinical trial design and decision-making.

Latest Update

Current Objectives and Focus Areas
Presently working on distributing a survey to PPRCT members as well as BMJ guideline panellists to determine consensus on the quality of AI-generated health outcome descriptors for rheumatoid arthritis treatment.
Recent Milestones Achieved
New fellow (Krista Dagsvik) will be attending the OMERACT conference in May to present research thus far and upcoming projects related to health outcome descriptor production.
Upcoming Activities and Deliverables
OMERACT PPRCT meeting March 27th. Discussing the upcoming survey designed to evaluate health outcome descriptors for use in patient valuation studies for rapid recommendations in partnership with MAGICAPP and BMJ.

Next Meeting

TBD
MethodsIdentify research need describe gap in current Core Outcome Set methods Roadmap
PPRCTs

Recent Publications

  1. Thomas Megan, et al. "Patient preferences to value health outcomes in rheumatology clinical trials: Report from the OMERACT special interest group". Seminars in Arthritis and Rheumatism. 2021 Aug;51(4):919-924. doi: 10.1016/j.semarthrit.2021.05.008. 
  2. Thomas, Megan, et al. “Exploring Perceptions of Using Preference Elicitation Methods to Inform Clinical Trial Design in Rheumatology: A Qualitative Study and OMERACT Collaboration.Seminars in Arthritis and Rheumatism, vol. 58, 152112, 2023, https://doi.org/10.1016/j.semarthrit.2022.152112.

New to OMERACT?

OMERACT Working Groups follow a structured, consensus-driven approach to developing Core Outcome Sets. Explore how this process unfolds and discover more about how OMERACT advances outcome measurement in rheumatology.
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