Table 1 Relative strengths and weaknesses of public involvement initiatives

Inclusion

Strongly inclusive insofar as they aim for statistical representation through stratified sampling techniques

Moderately inclusive insofar as they aim to capture views of a range of vested stakeholders, but risk conflating patient and public interests and often fail to achieve demographic diversity

Weakly inclusive insofar as they generally accommodate one or two lay members

Informed deliberation

Weak where, due to their ad hoc design, they lack the potential for learning governance

Strong due to stable membership structures which support learning governance

Strong due to stable membership structures and because the dual expertise of lay members may support informed decision-making

Influence

Weak as they lack formal integration into medical research governance

Strong because of documented impact on research design and outcomes and because members build up ties with expert decision-makers, who, though obligations of reciprocity, are held informally accountable to the PPI group

Strong as lay members have equal decision-making powers regarding data sharing for medical AI research