Patient engagement strategy workshop

Start Date 28/04/2016

On 28 April, IMI held a Patient Engagement Strategy Workshop in Brussels Belgium, with the goal of optimising IMI’s efforts to be more patient-centric. Over 50 people attended the workshop, including representatives of patient organisations, foundations, consumer organisations, regulatory bodies, the European Commission, the European Federation of Pharmaceutical Industries and Associations (EFPIA), and non-profit organisations.


Case study: Active patient participation in research – U-BIOPRED
David Supple, U-BIOPRED Patient Input Platform (PIP)

Case study: BTCure – in search for meaningful involvement of patients in rheumatology research
Maarten de Wit, EULAR

The patient view
Jan Geissler, EUPATI

The patient view 

The industry view
Magda Chlebus, EFPIA

The European Medicines Agency (EMA) view
Isabelle Moulon, EMA

Anders Olauson, European Patients Forum (EPF)

Useful documents

The Innovative Medicines Initiative and patients – a partnership 
Brochure by IMI

A short guide to successful patient involvement in EU-funded research
Lessons learnt from the U-BIOPRED project

On the path to a science of patient input 
Anderson, M & McCleary, K (2016) Science Translational Medicine 8 (336): 336ps11

Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology
De Wit, MPT, Kvien, TK, Gossec, L (2015) RMD Open 1: e000129

Partnering With Patients in the Development and Lifecycle of Medicines: A Call for Action
Hoos, A et al. (2015) Therapeutic Innovation & Regulatory Science 49 (6): 929-939

European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects
De Wit, MPT et al. (2011) Ann Rheum Dis 70: 722-726