The demand for patient engagement in healthcare decision-making and research increases continuously. Our community has therefore reflected already in the past on how to ensure engagement is meaningful, so who the most meaningful person to engage would be- improving the patient experience at a local site for example will require a different type of perspective and expertise than the review of a clinical trial protocol.
Overall, increasing opportunities for patient engagement certainly are a positive trend. However, with limited resources the opportunity cost of engaging in low-impact/ low-return activities is becoming considerable: time that is spent on an activity that makes no difference to patients- we have all witnessed those tick-box patient engagements- can no longer be spent on more meaningful activities.
For this reason, we have created a simple framework to assess the Return on Engagement for our community. When analysing the reasons for our engagement in research projects or speaking activities, we identified several domains: 1. making a difference to patients and having impact on Melanoma, 2. learning and acquiring skills that could be used in different contexts later, 3. establishing a reputation and ourselves as trusted party in the ecosystem and 4. funding.
One evaluates and annotates each of the domains on a hypothetical scale of 0 'no return' to 10 'maximal return'. The resulting surface represents the return on engagement of a given activity- the larger the surface, the larger the return.
The tool is obviously subjective- what constitutes learning for one person might not for another- and outcomes will depend on available opportunities and resources. It is useful to visualise trade-offs- one might decide to e.g. engage in an unpaid activity if the expected benefit to patients is large. It is difficult to estimate the impact as well as the potential return of novel activities. In our experience however, novel type of activities more often than not deserve the benefit of the doubt. Using the framework for a before/after comparative assessment of the expected versus the realised return can then help to identify what type of activities benefit patient communities most.
The ROE- Return on Engagement framework is intended as a 'thinking tool' inviting reflection to both select more effectively those activities that provide most value to the patient community as well as to learn from past experiences. While in the end, it's always a judgement call- the framework is particularly effective at identifying those low-return activities not to engage in.