How to Get Involved in OMERACT as PRP

---

OMERACT is a global, volunteer-driven, not-for-profit organization committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies.

Through rigorous methodology and our global Working Groups, OMERACT supports the development of Core Outcome Sets (COS), identifying patient and disease-relevant areas to be measured (domains) and the corresponding measurement instruments for use in clinical trials, including those for regulatory approval of new treatments. https://omeract.org/

An OMERACT PRP is an individual who has lived experience with a rheumatic or musculoskeletal condition and actively participates within OMERACT. Their role is to infuse the research process with their unique PRP perspective, ensuring that OMERACT's initiatives are truly patient-centred, address real-world concerns and enhance the relevance of outcomes. By working alongside researchers, clinicians, and other collaborators and partners, OMERACT PRPs play a pivotal role in shaping research that resonates with the needs and experiences of patients in general.

As a PRP you will:

• Join working groups that develop core outcome sets and measurement tools.
• Advise on what outcomes matter most to patients.
• Help shape research priorities, methods, and dissemination of findings.

Being a PRP is not about taking part in a clinical trial. It’s about being part of the research team designing and guiding the work.

Your lived experience with a rheumatologic or musculoskeletal condition—or of caring for someone with such a condition—offers insights researchers cannot get from textbooks or datasets. This includes:

• Identifying domains that matter most to patients.
• Highlighting practical barriers to participation.
• Suggesting clearer ways to communicate research. 
• Ensuring diverse patient voices are represented.
   

You do not need technical knowledge to be a PRP. What’s unique is your personal perspective.

OMERACT working groups cover many conditions and topics. Different projects call for different kinds of lived experience. Sometimes groups need input from people living with a specific condition; other times from people with experience of caregiving or navigating health systems.

You do not need formal qualifications. Skills from work, volunteering, or family life can also be valuable. OMERACT will help you find roles that fit your interests and experience.

PRPs join OMERACT for many reasons:

• To make a difference in how research reflects patient priorities.
• To ensure better outcomes for future patients.
• To give back after benefiting from care or research.
• To ensure their community’s voice is heard internationally.
• To learn new skills and meet like-minded people.

PRP involvement is central to OMERACT’s mission. Every working group is expected to include patients as partners at every stage—from defining what to measure, to selecting instruments, to interpreting results. This ensures our recommendations are relevant, feasible, and meaningful.

PRPs are not “token” participants. Their input can change the direction of research and strengthen the evidence OMERACT produces.

As a PRP you can:

• Shape research priorities and outcome definitions.
• Influence study design to make participation easier.
• Improve the clarity and usability of instruments and materials.
• Help ensure findings are shared in accessible, impactful ways.

Many OMERACT PRPs have seen their input lead to real changes in research and clinical practice.

Examples of PRP roles at OMERACT include:

• Joining a working group to develop a core domain set.
• Reviewing plain-language summaries or survey materials.
• Advising on domain match and feasibility of instruments.
• Presenting at OMERACT conferences or webinars.
• Helping to disseminate results to patient communities.

Participation can happen online or in person. You can choose roles and time commitments that suit you, and you can always step back if needed.

When you first join, you may be asked to:

• Share your perspectives on draft materials, research ideas, or domain definitions.
• Attend meetings (virtual or in person) and contribute to discussions.
• Comment on patient information sheets, surveys, or presentation slides.

You won’t be expected to represent all patients—only to share your own perspective.

OMERACT strives to follow best practice in patient engagement:

• Inclusive opportunities – We seek diverse voices and make involvement accessible.
• Working together – We value all contributions and support respectful relationships.
• Support and learning – We offer orientation, resources, and mentoring to build confidence and skills.
• Communication – We use plain language and provide timely information.
• Impact – We monitor and share how PRP input makes a difference.

You may also receive a thank-you payment for your time, depending on the project and funding.

OMERACT offers:

• An onboarding PRP Toolkit and orientation resources.
• OMER-ED, our online learning platform.
• Peer support from experienced PRPs and the PRP Advisory Council.

Support is tailored to your needs—especially when you are new.

PRPs often say involvement gives them:

• A sense of purpose and empowerment.
• New knowledge about research and health care.
• Opportunities to develop and use skills in writing, presenting, or critical appraisal.
• Connections with a global network of peers and professionals.
• Increased confidence and recognition of their own expertise.

• OMERACT Website
• OMER-ED online learning
• Join the OMERACT Mailing List
• Review the OMERACT PRP Toolkit
• Contact the PRP Advisory Council at admin@omeract.org for questions or guidance.