Background Patients involvement has massively changed over the years. From patients as ‘objects’ of care, we have moved to patient centric approaches and are now embarking at full speed in the era of patients as partners. To better meet this evolution, a radical change is taking place in Patient organisations. LUPUS EUROPE is one of the leading players. LUPUS EUROPE’s 1st strategic objective is that ‘People with Lupus participate, and benefit from, Lupus Research’.
Methods We have stepped up our capacity and capability by creating a Patient Advisory Network, organising ‘naïve’ patient panels - by and for lupus people; and running surveys in the community.
Results Our Patient Advisory Network now comprises 18 patients that are investing time and effort to develop their knowledge and to help academics, investigators, industry and other partners. They are currently engaged in more than 20 different projects. We are active in the ERN ReCONNET, EURORDIS and EJP RD. Our patient panels have already addressed the topics of: defining treatment; adherence; clinical trials and youth. Our latest research, on Hydroxychloroquine, obtained 3500 answers from all over Europe. Thanks to this stepped-up capability, we are also now ready to work with EMA, as an EMA eligible entity.
Conclusions Lupus Europe is ready to partner where it can add value, and to receive requests for support from researchers. In 2020 again, we will launch significant initiatives in the research area: A large scale survey on ‘living with lupus in 2020’; the collection of feedback from participants in clinical trials to see how we can improve them and increase participation; and a further stepping up of the skills of our Patient Advisory Network. We need your help to increase our reach and work on jointly beneficial projects.
Acknowledgements Lupus Europe is mostly financed by contributions of industry – GSK, UCB, Idorsia, Boehringer, Janssen, Leo Pharma
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