Patient participation in fundamental psychiatric genomics research: a Dutch case study

OBJECTIVE To analyse the results of an action research process, the aim of which is to involve patients in fundamental psychiatric genomics research, against theoretical backgrounds that formulate a Dialogue Model for patient involvement. BACKGROUND Mixed views continue to exist about the value, appropriateness and potential of involving consumers and patients in basic medical research. There is a need to learn from practical examples. DESIGN An action research process was set up to facilitate and stimulate the involvement of a Dutch patient organization and a family organization in a psychiatric research consortium. FINDINGS The premises and procedures of the Dialogue Model constitute good guidelines for involvement in fundamental research. However, the normative core features for patient involvement underlying the model prove problematic due to: (i) properties of complex psychiatric genomics research; (ii) the entanglement of subjectivity and basic psychiatric science; (iii) universal notions of citizenship and difficulties of delineating the patient in psychiatric genomics research. CONCLUSION Interaction and dialogue among scientists, patients and family members are possible in fundamental genomics research. The best approach for involvement would seem to be based on the creation of common ground and an evolving dialogue, which the guidelines of the Dialogue Model can provide. The challenge here will be to create also a dialogue on the normative anchor points of the dialogue process and to identify and monitor power relations inherent in these (tangible) dialogues.