How to Get Involved in OMERACT as PRP

Introduction

There has never been a better time to get involved with OMERACT. Our global community of researchers, clinicians, and patient research partners is shaping the future of outcome measurement in rheumatology and musculoskeletal health. Through your lived experience and insights, you can directly influence the tools, measures, and evidence that guide care worldwide.

At OMERACT, patients are not just participants—they are partners. Whether you live with a rheumatologic or musculoskeletal condition, support someone who does, or represent a community whose voice is often missing from research, your perspective is essential. You don’t need to be an expert in research to get involved. We’ll guide and support you at every step.

Being part of OMERACT can be deeply rewarding. It’s a chance to learn, to grow, to make connections, and to see your input change practice on a global scale. Many of our PRPs say their involvement has helped them develop new skills, gain confidence, and find new opportunities—all while making a tangible difference to the lives of people living with chronic conditions.

By joining OMERACT, you’re becoming part of a vibrant international network working to ensure research truly reflects what matters most to patients.

OMERACT PRP Support Team

This guide is for people who are interested in getting involved with OMERACT as a Patient Research Partner (PRP). It answers common questions from people who are new to OMERACT and explains what to expect when you join. Topics covered include:

What is OMERACT?

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/

What is a PRP in OMERACT?

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.

What can I contribute to OMERACT’s 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.

Do I have the right experience?

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.

Why do PRPs get involved?

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.

Why does OMERACT involve PRPs in research?

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.

What difference will I make?

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.

How will I be involved?

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.

What will I be expected to do?

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.

What can I expect from OMERACT?

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.

What support and training will I receive?

OMERACT offers:

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

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

How will I benefit?

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.

Where can I find out more?

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

How to Get Involved in OMERACT as PRP

Introduction

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