Klaus Geissler was invited to participate in the 8th edition of the Advancing ILD Research (AIR) Educational Meeting to provide his viewpoint as a patient. The event was held on 17 November in Munich.
Mr Geissler co-led, together with Dr. Francesco Bonella, Chair of the EU-IPFF Scientific Advisory Board, two roundtable discussions on the topics of patient involvement in research and identification of research needs in interstitial lung diseases (ILDs). To lit the debate on patient-centricity, panelists were asked to address critical questions such as: How have your patients helped guide your thoughts on research needs ? Have you already involved patients in your research ? Would you consider formalizing the further involvement of patients in research ? How do you feel it would beneficial to include patients? What would be the challenges of including patients?
The questions triggered very interesting discussions. Agreement was reached on the concept that greater involvement of patients would improve recruitment of patients participating in clinical trials. This could also help identify new outcomes, implement inclusion criteria, consider different subgroup of patients who are generally excluded from clinical trials, such as those with advanced disease. An important learning from the debate is that more discussion is needed around the ethical implications of patient involvement in steering committees for the design of new clinical trials given the very stringent rules that exist to regulate interactions between companies and patients. “As a patient, I firmly believe that more patient involvement in research will be beneficial. Patient organisations and their leaders have the best knowledge on how to live/survive with this disease and know how to assess acceptable risks versus potential benefits of clinical trials for the development of new therapies” – commented Mr. Geissler in his concluding remarks.