New publication: Measuring Impact
MediPaCe has worked with Ipsen and 13 patient organisation representatives to co-create practical measures of patient engagement impact that are highly relevant for both the patient community and company.
Integrating patient insights into the medicine development process is important for everyone and required by authorities reviewing new treatments.
To consistently improve how this is done, the impact of patient engagement activities needs to be measured. Possible impact measures have been proposed before (for example, the PARADIGM initiative), but problems remain. In this study we interviewed 13 patient organisation (PO) representatives to explore their experiences of impact measures. Thematic analysis was conducted, and data used to adapt 23 potential impact measures in collaboration with patients.
The study identified that PO representatives view impact as being positive, tangible, and useful outcomes. Measures should be adapted to: 1) include greater context such as descriptions, patients quotes and satisfaction; 2) capture patient influence; and 3) use language that is understandable for all parties.
For more information see: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-022-00334-0
