Prioritization of all Impacts
At this stage, the suite of patient-prioritized impact data is integrated with other stakeholder-informed impact data to be filtered through a second prioritization process of ALL impacts collected. It is expected that there will be at least some alignment between the two sources of data – but keep in mind that when there appear to be differences, it may be a difference in wording or description versus a true difference in content. Patients need to be heavily involved in ensuring their intended meanings are understood by the full group and impacts contributed by others are understood by patients.
By way of reminder, as Patient-Centered Core Impact Sets (PC-CIS) are an emerging and evolving tool, there is no proposed goal for the “ideal” number of impacts to arrive at. The expectation is that the correct number of impacts will vary by condition or population. In the development of the PC-CIS, the goal should be to compile the number of impacts that is representative of the full body of issues most important to patients and families. There is no gold-standard number.
Ensuring the Patient Voice is Maintained
In this prioritization phase, the issue of particular importance is ensuring that impacts prioritized by patients cannot be disregarded. While the same tools and methods used for the first round of prioritization are equally applicable here, there is one important caveat. In the second round of prioritization, it is critical that impacts patients identify as important or worth keeping cannot be “voted out” of the final prioritized list.
The group may want to consider a weighting structure that ensures patient-voted priority impacts are retained. While there are not examples of PC-CIS creation methods (because they do not yet exist), there are several examples from multi-stakeholder COS development that are valuable resources to consider to maintain the patient voice:
Arthritis Use Case