A key PARADIGM objective was to gather and analyse perspectives from all stakeholders involved in medicines development, in order to better understand their expectations when it comes to patient engagement.

This took place via an online survey and several focus groups, to ensure the perspectives of stakeholder groups difficult to reach through online methods were also captured. The results of these activities were the basis for three Delphi exercises covering the three decision points addressed by PARADIGM.

In March 2019, the main PARADIGM partners working on this task met at a workshop in Oxford where they discussed the results of the Delphi process, turning them into prioritised criteria for good patient engagement practices and advising the project on their contextual application.

The key observation is that the most needed mechanism for improved patient engagement is, ‘metrics to measure outcomes and impact’. It is also important to note that although the majority of patient groups reported that they are prepared for patient engagement, they also signalled that they often needed extra help (e.g. financial and logistical help). Finally  ‘lack of shared vision and communication’ was considered a common challenge among other stakeholders, particularly patients and patient groups.

In another session, the group discussed the preliminary results of three Delphi panel groups. The three groups held similar views on the aims and objectives, and the importance of the selection of the correct target population, but had differing opinions on sustainability, patient engagement impact, involvement and participation, evaluation of the patient engagement practice, feedback and conflicts of interest. Further detailed analysis of Delphi results will be available in the coming months.

In two other sessions, a draft version of a tool which will help to measure gaps in existing practices and processes against the criteria developed in the Delphi was presented and discussed. In one working session, the final Delphi criteria were translated into the current framework of the gap tool to ensure that the preferences, needs and expectations needed for patient engagement can be assessed against what exists in a snapshot of today’s practices and processes of patient engagement. In the other working session, both feedback and teaching occurred on a digital version of the tool. The final version will be digital in order to improve usability and access to users when performing a gap analysis.

The outcome of the gap analysis performed during the summer will help to inform PARADIGM in developing the kind of resources, recommendation and material needed to bridge some of the identified gaps and to support and increase the adoption of more effective and sustainable patient engagement.