Table 1.
Component | Subcomponents and application within this study All included subcomponents are in bold in this column |
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Objectives | What is aimed to achieve with patient engagement in the RECOVAC consortium? |
Input |
Are the conditions for meaningful patient engagement in place? This component is divided into 4 subcomponents. Expectations refers to expectations all consortium participants have regarding patient engagement, but also to the needs, beliefs and priorities of everyone involved. Taking all this into account will enhance satisfaction, indirectly influencing learnings, changes and impacts. Preparations studies the accessibility (of preparatory materials) and preparedness of the patient engagement. It is believed that studies/consortia that are better prepared have better results. Resources as third subcomponent refers to materials, human and financial resources available to carry out the patient engagement. Dedicated time and funding are necessary to ensure meaningful and sustainable patient engagement. Representativeness of stakeholders, assessing the expertise and diversity of stakeholders involved is the fourth subcomponent included. Carefully selecting patient partners is a critical step to obtain meaningful patient insights. The diversity of patient representatives is seen as a predictor for the diversity of learnings and recommendations. |
Activities and the process of patient engagement |
Monitoring activities and processes provide insight into the progress of implementation of patient engagement and what improvements can be made to enhance the implementation. Four subcomponents are important. Structure refers to the way patient engagement activities are organized: ‘what activities took place’ and ‘when’. Management refers to how patient engagement is facilitated. Interactions assesses the quality of the interactions between the stakeholders involved. Satisfaction includes the overall experience of those involved in the patient engagement initiative. Satisfaction is thought to be an important factor contributing to the willingness to collaborate and the overall value of patient engagement. |
Learnings and changes |
Learnings refers to the insights and recommendations people deduce from the patient engagement activities. These learnings can be very diverse and stakeholder specific. Researchers may gain more insight in and better understand the experiences of patients’, while patients may learn about research processes. Metrics to measure learnings are challenging to define beforehand, as it is difficult to predict what you may learn from the patient engagement activities. Therefore, no metrics have been defined to measure learnings. Changes as a result of the patient engagement process refer to the actual adjustments made to the research and to changes on a more individual level, such as changing attitudes. |
Impacts | If the acquired learnings and changes are put into practice, then long term impacts may be generated. Impact is studied using a wide variety of subcomponents, depending on the goals of patient engagement. The subcomponents that are included in this study are Research relevance, study quality and efficiency, reputation and trust and embedding of patient engagement. |
Context | When executing and assessing the contribution of patient engagement, it is essential to consider its context. Context has both an influence on the execution of the research, especially in this COVID research project, and on the impact the process and results will have in a later stage. Policy, community and decision-making context are included in this study. |