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Every year, multiple projects are initiated to better understand lupus, its impact, and potential treatments on this discovery path. To progress, most of these projects require the co-working of multiple experts with different skills, experience, and knowledge. Clinicians, biologists, data experts, methodologists, but also people living with lupus are often part the core group of such projects. While doctors bring their medical expertise and their clinical experience, patients also contribute a specific expertise: their experience of living with the disease, and their knowledge of the patient community. This experience is fundamental to guide projects, ensuring that patients remain at the core, to raise or answer questions on the possible impact of the project on patients, to review documents (like consent forms or information sheets) so as to ensure that patients seeing them will understand the key content, to participate to ethics boards or to translate the scientific work in “lay language”.
All over Europe, patients with an interest in research are volunteering to take part in such projects. The level of time commitment is often quite flexible. It is very important that those patients are connected with their community. LUPUS EUROPE’s Patient Advisory Network coordinates the cross-border training, connection and engagement of people living with lupus in Europe willing to support this area. On a national level, doctors or national patient group sometimes run such initiatives. The benefit of being part of such a Network is that another team member can provide support or even replacement when someone’s lupus becomes active or other urgent priorities arise.
Patient Research Partners are not expert in the medical, biological, or scientific aspects of lupus, but they are experts of their own life with the disease. The training available is designed to help them bring that expertise in an impactful way to the medical, biological, or other experts involved in the project. The best way to get involved is to contact your national Lupus patient organisation or LUPUS EUROPE, expressing your interest. In some countries, training is available in the national language.
Outside of these organisations, multiple training resources are available online. The Expanded Professional Associates (EPAP) program (available in eight languages) is a simple start explaining how to best represent patients. EURORDIS’ Open Academy offers many modules of high quality on multiple problematics. The European Patients’ Academy on Therapeutic Innovation (EUPATI) also offers high quality (acceptably quite demanding in terms of time investment) training on the whole cycle of medical research.
For those that have engaged in this activity, supporting research is often considered as a rewarding activity, which is building their knowledge of lupus, their ability to cope with it, but also growing their skills and their self-esteem.