SP0058 Patient involvement in respiratory research
Authors: C. Coleman
Journal: Annals of the Rheumatic Diseases (2018)

<h3></h3> The European Lung Foundation (ELF) mission is to bring together the public and patients with respiratory professionals to improve lung health. ELF was founded by and works in a unique partnership with the European Respiratory Society (ERS), a membership society for respiratory professionals. A core part of ELF's activities is to ensure that the perspectives of people living with a lung condition help to inform research, treatment and policy activities at a European level. ELF has extensive experience of facilitating patient engagement in research and clinical projects, including in EU-funded consortia, and has published extensively on the topic. During this session, ELF will share its experience of involving patients in respiratory research collaborations. Focusing on three projects as exemplars of different stages of the research process, ELF will share some of the lessons, challenges, and key benefits of involving patients in research and will highlight how these can be transferred to projects beyond the respiratory field. Research priority setting: the European Asthma Research and Innovation Partnership (EARIP) set out to develop a coordinated and integrated approach to the future of asthma research and development by creating a roadmap of the components needed to reduce the burden of asthma, in terms of the impact on individuals and on healthcare systems across Europe. ELF led a research priority setting process in which patient perspectives played a central role. The resulting research priorities have been taken forward by research funders and consortia, helping to ensure that the future research agenda is patient-centred. Key lessons: how to involve patients in research priority setting how to build consensus between patient, clinical, research and industry stakeholders <b>Clinical trials:</b> the ground-breaking U-BIOPRED (Unbiased Biomarkers for the Prediction of Respiratory Disease Outcomes) project involved patients with severe asthma as equal partners. Up until this point, many projects funded by the EU Innovative Medicines Imitative (IMI) had limited or no involvement of patients. As a result of the successful partnership between patients and professionals, IMI asked the project to develop a guide to patient involvement in EU-funded research so that the experience could be transferred to other disease areas. U-BIOPRED is still considered a pioneering project in terms of its level of patient involvement and many new studies use the approach as the exemplar for how to engage patients as partners. Key lessons: how to involve patients as equal partners in clinical research how to maximise the opportunities for patient input where patients can add value to clinical projects <b>Disease registries:</b> the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is an ERS Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the EU IMI Programme. Patients have played a central role in defining the scope, ethics, governance and data protection processes for the registry and the next phase of the project will include a patient-powered registry in order to capture patient-important outcomes directly from people affected by bronchiectasis. Key lessons: patients' and clinicians' recommendations for involvement in research – dos and don'ts how to involve patients from rare disease communities in research <h3>Conclusion</h3> Patient involvement in respiratory research has grown significantly over the last decade. Patient perspectives are increasingly considered to be a core component of every research project and the wider respiratory community values the important role patients now play. ELF has facilitated the involvement of people with lung conditions in a wide range of research projects and the lessons learned are highly transferable to other disease areas and settings. <h3>References</h3> [1] Masefield S, et al. The future of asthma research and development: A roadmap from the European Asthma Research and Innovation Partnership (EARIP). Eur Respir J2017:49. [2] Supple D, et al, on behalf of the U-BIOPRED PIP group. From tokenism to meaningful engagement: Best practices in patient involvement in an EU project. <i>Research Involvement and Engagement</i>2015;1:5. [3] UBIOPRED PIP. <i>A short guide to successful patient involvement in EU-funded research: Lessons learnt from the U-BIOPRED project</i>. IMI2016. [4] Chalmers J, et al. Patient participation in ERS guidelines and research projects: The EMBARC experience. Breathe2017;13:195–197. [5] Aliberti S, et al, on behalf of the EMBARC Study Group. Research priorities in bronchiectasis: A consensus statement from the EMBARC Clinical Research Collaboration. Eur Respir J2016;48:632–647. <h3>Disclosure of Interest</h3> None declared