Empowering Voices in Core Outcome Set Development in Rheumatology
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OMERACT Patient Research Partner Network

Frequently Asked Questions

  

Getting Started with the PRP Network

No formal application is needed to become part of the OMERACT PRP Network. Anyone with lived experience of a rheumatologic or musculoskeletal condition—or of caring for someone with such a condition—can express interest and start participating. The only application process relates to attending an OMERACT conference, where delegate numbers are limited and support is allocated based on the programme and funding.


Absolutely. Many people find it helpful to hear from someone who has already experienced being a PRP before they join.


Please email admin@omeract.org with:


  • Your contact details
  • Your location and time zone
  • A short description of your experience (for example, your rheumatic or musculoskeletal condition, or your role as a carer)


We’ll do our best to link you with a PRP who shares similar interests or time zone. They can answer your questions, describe what being a PRP is like, and help you decide how you’d like to get involved.


No. You’re invited to share your own experience and perspective. This adds essential richness to OMERACT’s work. As more PRPs with diverse backgrounds join, the collective picture becomes stronger.


Yes. When you apply, you can indicate your interests or conditions. The PRP Advisory Council will suggest Working Groups that fit your expertise and availability. You can move to a different group later if your interests change.


Yes. OMERACT follows strict data protection policies. Your contact details and any health information you share are kept confidential and only used to support your involvement.


Time commitments vary depending on the Working Group and the stage of the project. Some PRPs participate for an hour or two each month; others take on larger roles such as co-authoring papers or presenting at conferences. You can start small and increase your involvement as you feel comfortable.


  

Supporting and Funding PRPs

You’ll receive:


  • A PRP Toolkit with key information
  • Access to OMER-ED online learning modules
  • A named contact person in your Working Group



PRPs are typically listed as contributors or co-authors on publications, presentations, and posters when their input has shaped the work. OMERACT also highlights PRP contributions at conferences and in newsletters.


OMERACT recognises the time and expertise PRPs contribute.


  • Conference participation: Travel, accommodation, and meals for selected PRPs are covered.
  • Working Group activities: Some groups may offer honoraria for substantial contributions, depending on funding.


As you gain confidence, you may:


  • Co-lead a Working Group
  • Mentor new PRPs
  • Present at international conferences
  • Co-author journal articles or lead sections of a project


The PRP Advisory Council can help you identify opportunities to grow.


No. The unique value you bring is your lived experience. You’ll learn about research as you go. OMERACT offers orientation, mentoring, and online modules to help you build knowledge and confidence.


Yes. Most Working Group activities are held online so PRPs from all regions can contribute. If you can’t attend a conference in person, you can still review materials, join calls, and shape the work remotely.


We understand that living with a long-term condition or caring for someone can be unpredictable. You can adjust your involvement at any time. Just let your Working Group lead or the PRP Advisory Council know if you need to pause or step back.


  

Conferences and Events

Yes. Conference participation is limited to around 150 delegates to enable in-depth discussion and consensus-building. PRPs who are active members of Working Groups can be nominated for financial support to attend. Selection is based on the programme, funding availability, and maintaining a balanced mix of conditions and perspectives.


At a typical conference you’ll meet:


  • Patient Research Partners (PRPs): Around 15 PRP delegates from across the globe.
  • Fellows: Junior researchers, many completing PhDs, whose projects are included in the programme.
  • Clinicians: Specialists with a strong interest in outcome measures and patient-reported outcomes.
  • Scientists and Industry Researchers: Key partners whose contributions have helped make many advances in treatment possible.


This mix creates a collaborative environment where everyone—including PRPs—works together as equals.


Yes, and that’s by design. PRPs participate in every aspect of the conference programme, not only sessions related to their own condition.


Your lived experience as a person with a long-term condition is valuable even in areas outside your specific diagnosis. Many of OMERACT’s most important breakthroughs have come from PRPs providing insights that researchers hadn’t considered.


PRPs make up about 10% of delegates, so your perspective in all sessions is critical to shaping better outcome measures across conditions.



Unlike most medical conferences, which focus on sharing completed research, OMERACT is a working conference. Delegates present and discuss ongoing research to reach consensus on core outcome sets. Holding the conference every two years allows groups time to do meaningful work between meetings.


OMERACT is an international organisation, and we want participation to be as equitable as possible. Rotating between continents and hemispheres helps share the burden of travel, time zones, and cost.

If the conference were always held in one region, many PRPs and researchers from other parts of the world might be unable to attend due to the distance and expense. Rotating locations allows for broader representation and inclusion.


Not necessarily. Like Fellows and researchers, not every Working Group member attends the conference.


However, your input is still essential—and not limited to those who can travel. OMERACT Working Groups rely on ongoing PRP contributions through calls, online meetings, and document reviews throughout the year. Many PRPs influence research deeply without ever attending a conference in person.


If your project is being presented at the conference, your Working Group may nominate you for support to attend. Final selection depends on the programme, funding availability, and maintaining a balanced mix of conditions and perspectives.


  

Being a PRP Between Conferences

Most of the work at OMERACT happens year-round in Working Groups. Between conferences, PRPs:


  • Join online meetings (usually via Zoom)
  • Review draft surveys, presentations, or plain-language materials
  • Give feedback on what outcomes matter most to patients
  • Help interpret research results and identify gaps
  • Contribute to consensus exercises such as Delphi surveys


You can choose which activities suit your interests and time.


  

Staying Connected and Informed

  • svdHave a question not covered here or want to express interest in the PRP Network? Contact the PRP A at 
  • Follow OMERACT on social media for calls and updates
  • Ask your Working Group chairs to alert you to new projects


Have a question not covered here or want to express interest in the PRP Network? Contact the PRP Advisory Council at admin@omeract.org



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