[Research for us! Which Topics are Relevant for Patients with Depression?] / Forschen für uns! Welche Forschungsthemen interessieren von Depression Betroffene?

OBJECTIVE: To identify and prioritize research questions about treatment and care of depression which are relevant to patients, carers and clinicians. The importance of involvement of those stakeholder groups in health services research is increasingly recognized internationally. METHODS: Research topics were collected in an online survey using unipark software. Patients, carers and clinicians wrote down research topics, i. e. uncertainties they experienced when dealing with depression. The stated research topics were summarized by the authors to generate research questions. Patients, carers and clinicians rated the importance of the identified research questions using a 7 point likert-scale in a further online-survey. RESULTS: Respondents rated research questions with regard to accessibility and organization of care as especially relevant. A research question regarding the effectiveness of self-help and coping-strategies was rated as most important. Further relevant research questions refer to decide on and find effective therapy. CONCLUSION: According to patients, carers and clinicians more research about self-help and access to treatment should be conducted.

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.

[How to do Research? Development and Evaluation of a Research Training for Patients with Mental Disorders]. / Mitforschen, aber wie? Entwicklung und Evaluation eines Forschungstrainings für Psychiatrieerfahrene.

Objective Participation of mental health services users in research is increasingly acknowledged in Germany. Principles for successful involvement include research training for service users. The aims of the project were (1) to develop and (2) to evaluate a research training. Methods The research training was developed in five participatory meetings and piloted with 28 participants. They answered questions on the research training and about their interest in research, research-related empowerment and research participation. Results Interest in research did not change. But there is a difference between research-related empowerment before (t1) and after (t2) the research training (z = - 2.237; p = 0.025). The number of participants registered in scientific studies increased from 4 (t1) to 8 three months later (t3) whereas the number of participants reporting own research ideas decreased from 7 (t1) to 5 (t3). Conclusion Although interest has not been affected, the evaluation shows significant effects on research-related empowerment in participants. Results concerning transfer are divergent. However, feedback was positive. We are planning to disseminate and refine the training.