Patient involvement in a systematic review: Development and pilot evaluation of a patient workshop

Patient involvement (PI) in research is increasingly required as a means to improve relevance and meaningfulness of research results. PI has been widely promoted by the National Institute for Health Research in England in the last years. In Germany, widespread involvement of patients in research is still missing. The methods used to realize PI have been developed mainly in English research contexts, and detailed information on how to involve patients in systematic reviews is rare. Therefore, the aim of the study was that patients contribute and prioritize clinically relevant outcomes to a systematic review on meta-cognitive interventions, and to evaluate a patient workshop as well as patients' perceptions of research involvement. Seven patients with experience in psychiatric care participated in our workshop. They focused on outcomes pre-defined in the review protocol (e.g., meta-cognitive or cognitive changes, symptomatology, quality of life), neglected other outcomes (like satisfaction with treatment, acceptability), and added relevant new ones (e.g., scope of action/autonomy, applicability). Altogether, they valued the explicit workshop participation positively. However, some suggested to involve patients at an earlier stage and to adapt the amount of information given. Further systematic reviews would benefit from the involvement of patients in the definition of other components of the review question (like patients or interventions), in the interpretation of key findings or in drafting a lay summary.