Introduction

The demand on patient representation in rheumatology research is growing every year. To be meaningfully involved in different research projects, people with rheumatic and musculoskeletal diseases (RMDs) benefit from specific education and training. This online course is developed for people with RMDs who want to provide the patients’ perspective in rheumatology research. Where other educational programs focus on drug development and market authorization, this course prepares Patient Research Partners (PRPs) for their specific role in a more diverse spectrum of scientific initiatives. Patient Research Partners are people with a RMD who collaborate with researchers as equal team members during all stages of the project.

The course comprises twelve modules on topics varying from epidemiology, developing management recommendations and health economics to PRP-researcher communication, basic research and dissemination. It will provide you with the knowledge, skills and confidence to represent the patient voice in scientific research projects. With this course you start a journey that will take you into uncharted territory.

Key features of the modules

·       Developed by experienced PRPs and researchers

·       Checked for scientific accuracy by the EULAR medical advisor

·       Interactive format combining reading, watching videos and working on assignments and questions for reflection

·       Providing basic knowledge on concepts and methods of research

·       Providing reference cards for use in practice

·       Focused on the role and specific contributions of PRP’s

·       Self-assessment at the end providing access to the next module

Overall learning objectives

After completion of the course participants are able to

·       constructively contribute to scientific projects

·       understand basic medical and methodological terms, concepts and principles

·       communicate the patient perspective in appropriate settings

·       appreciate the importance of evidence-based medicine

·       recognize how they can contribute during different stages of the empirical research cycle

·       critically appraise scientific articles

·       review research grant applications from a patient’s perspective

Target audience

This online course is primarily developed for people with RMDs who want to actively get engaged in research. More and more patient organisations as well as research institutes have established networks of Patient Research Partners. They collaborate with researchers on a local, national, and international level with the purpose to provide the patients’ perspective. This course is developed to learn more about the benefits, opportunities, limitations, and pitfalls of patient and PRP involvement in scientific research.

A secondary target audience is informal carers and family members who want to represent the patients’ voice in rheumatology research. Also, volunteers and staff members of patient organisations with an interest in collaborative research are welcome to follow this online training course. 

A third target audience is researchers who foster collaborative research and want to learn more about how patients and PRPs can be involved in their projects. Currently, training opportunities for them are scarce, and following this course could benefit professionals with an interest in building partnerships with patients.

Finally, the course can be followed by people who are generally interested to learn more about how patients can assist in improving research for the benefit of all. 

Requirements 

The requirements for participating in the online modules are the same for all participants. We expect that participants have an interest in rheumatology research and are willing to commit between 12-20 hours of study time per module.  

The expected level of knowledge of the participants is at least completion of secondary school (a minimum of 12 years of education). The course is in English, so an adequate level of English language skills (reading and understanding) is required. For participants with the ambition to become members of the EULAR PRP network, an adequate level of English language skills is required. 

Duration

The duration of the course is 2 years with 6 modules released in the first year and another 6 modules in the second year (October 2024 -May 2026). The modules will be released one after another. You have to successfully complete all activities including self-assessment of one module to be able to access the next module.

Topics and starting date year 1

Topics and starting date year 2

Certificate

If learners complete the first 6 modules before 15 June 2025, they will receive a letter of attestation to confirm their completion of the modules on schedule.  

At the end of the course, there will be a final examination (May 2026) for all learners who will have completed 12 modules that will result in an official EULAR certificate for successfully completing the EULAR online course for PRPs. This certificate gives access to the registration as an official EULAR Patient Research Partner.

In case you have not completed one or more modules or if you do not pass the final exam, the course will be automatically extended for ONE year without charges.

The registration opens from 1 June to 30 November 2024.