Table 1.

Phased Participatory Approach

Phase	Objective	Stakeholders involved	Methods:	Decision-making	Output
1) Initiation and preparation	To understand the EuroCAB context and review existing M&E practices	Project team	Document analysis, informal conversations	Not applicable	Preliminary case description
2) Collection, exchange, and integration of information	To reflect on the collaboration processes and experiences with M&E to identify meaningful metrics and iteratively develop and refine the framework	23 CAB members 4 industry representatives Project team	Reflection sessions, 2 group sessions, and 6 one-to-one sessions	CAB members’ and industry representatives’ insights were used to develop the theory of change model and draft a set of potentially relevant metrics	Preliminary framework consisting of a theory of change and tailored set of possible metrics
3) Priority setting	To prioritize the identified objectives and metrics to develop a set of meaningful metrics	24 CAB members 6 industry representatives	Questionnaire	CAB members’ and industry representatives’ rankings were used to cluster metrics into groups of low, medium, and high priority	Ranking of most important objectives and most relevant metrics
4) Validation and planning	To validate the theory of change and set of metrics for M&E and to gather ideas for data collection and reporting	3 CAB members 5 industry representatives Project team	Digital dialogue workshop	CAB members and industry representatives discussed which metrics to include in the tailored framework and discussed how these could be measured and reported	Tailored framework with sets of metrics and ideas on how to implement M&E

CAB, community advisory board; EuroCAB, a collection of CABs participating in this European Organisation for Rare Diseases program; M&E, monitoring and evaluation.