Not unlike the Shakespearean play, Measure for Measure, justice is critically important to PARADIGM. Both the play and the initiative are focused on the sensibilities around the concept of justice. If PARADIGM is to fulfil its promise, the overall patient engagement outputs must be justified, in other words, be found to be legitimate or valid and to have value. One important output for PARADIGM is the design of a monitoring and evaluation framework for patient engagement.
A challenge in creating the monitoring and evaluation framework is that value is a subjective concept. It is determined by the importance an individual places on the specific measurement. While you can’t please everyone, our goal is to find a way to measure value from the perspective of a number of key stakeholders such as patients, regulatory authorities and the biopharmaceutical industry.
Like many investigations, we started with a review of the literature to determine current practices, explore what is working, and identify existing gaps. This initial work has been compiled in a scoping review, Return on Engagement. It provided a substrate for blog posts, presentations in scientific meetings and a report to IMI. This content also forms the basis for a draft framework. Additional communication and dissemination activities in 2018 included workshops to further refine the various value propositions that were uncovered and determine the overarching monitoring and evaluation framework, as well as provide a test bed for metrics development.
Our attention in 2019 is focused on further co-creation and testing of the monitoring and evaluation framework with diverse initiatives and stakeholders. The culmination of this inclusive process will be at the PARADIGM open forum in the fall. The measure of success will be judged by the extent to which we accomplish our goal; the achievement of a rich, iterative monitoring and evaluation framework that serves the needs of diverse groups. The measure of our own success is based on our ability to enrich good quality engagement practices.