Patient Involvement Matters for Health Economics


The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) announced in December that its board of Directors has approved the creation of a special category for Patient Representatives.

This decision reflects the desire to have more systematic patient representative involvement throughout ISPOR and has been welcomed strongly by patient leaders who have been involved in regular patients’ roundtables within the society over the past few years.

EPF was invited to participate at their last major Annual European Congress in Milan, where EPF Secretary General Nicola Bedlington attended the Patient Representative Roundtable. Nicola presented ADAPT SMART, an IMI project led by the European Medicines Agency, in which EPF is involved. This project focuses on Medicines Adaptive Pathways to Patients (MAPPs).  The Roundtable was also an opportunity to contribute to ISPOR’s Patient Representative Strategy that led to the board decision.

During her time in Milan, Nicola presented the European Patient Academy on Therapeutic Innovation (EUPATI) at the ISPOR CEE Network meeting.  ISPOR national chapters committed to support the establishment of EUPATI National Platforms in CEE countries where they do not yet exist. This great news follows the lead of Slovakia where Dominik Tomek, EPF board member and ISPOR board member has been instrumental in creating the Slovakian EUPATI National Platform and obtaining resources for the translation of key elements of the EUPATI toolbox.

ISPOR as a society is one of the EUPATI Consortium Members and has played a particular role linked to the development of HTA educational materials.

In Milan, EPF was also given the opportunity to present EPF’s collaboration in the payers and HTA environment in a workshop dedicated to optimising patient involvement in payer health care decisions to access new medicines.

Nicola said ‘The Milan Congress and the ISPOR’s board decision demonstrate a deep seated commitment amongst ISPOR leadership to embrace patient engagement as integral to the important work they do. EPF is very much looking forward to continuing this strong collaboration in the future”.

Contact: Nicola Bedlington, EPF Secretary General,