Patient engagement remuneration: what are the capabilities, skills and expertise needed to engage with pharma on medicines development? The answer depends on the activity in question.
The publication of Global Remuneration Principles for engaging with pharma companies addresses the growing need for consensus in this key area. Attention is now turning to the practicalities of determining fair market value for contributions to a wide range of pharma-led patient engagement activities.
This was debated in a February session of the Patient Engagement Open Forum (PEOF) which aimed to demystify the methodology behind patient remuneration. To take this work forward, the PEOF hosted a highly interactive workshop on 14 April, taking a deep dive into the various levels of capabilities and expertise required for specific patient engagement activities. The output of this workshop will help to refine a framework to operationalize the intent of the Global Principles.
During the workshop, participants from industry, patient advocacy and other patient engagement stakeholders co-created lists of the key competencies and skill sets required for three very different patient engagement activities. Together, the group prioritised the expertise needed for engaging in activities with pharmaceutical companies. The exercise was conducted using an interactive tool – GroupMap – in which participants were able, in real time, to propose and refine comprehensive lists of expertise and skills for each activity example. A overall summary of the inputs is as follows:
The exercise highlighted the diverse expertise and skills required and the relevant importance of these, depending on the activity. For example, ‘lived experience of the disease’ is top of the list of ‘must haves’ for co-creating educational materials. However, while variations of this expertise feature in all tasks, chairing a panel on patient-reported outcomes requires communication skills and knowledge of PROMs, their usage and application, and representativeness featured prominently in the list of desirable skills for patient advisory boards.
The exercise will help to further develop an expertise framework which will form part of a patient remuneration methodology. Subsequent PEOF events will continue to develop this major initiative which is designed to address a key gap in the patient engagement landscape.