Researcher Best Practices
WeSearchTogether was created in part to learn what individuals want and need from research participation so that this information can be shared with researchers. Opening the lines of communication between everyone involved in mental health research will accelerate the progress of discovery.
Through our conversations with potential participants and researchers, we have discovered a number of common beliefs. We share the following information with you in the hopes that they will enlighten researchers understanding of participant needs and desires.
Q: Are consumers most motivated to participate in research by financial profit?
A: We’ve found that helping others and the community, and the possibility of making progress toward cures are the strongest motivations to participate.
Q: Do participants want to know the results or goals of the study?
A: Participants have told us that they want to be considered as a part of the research team. Learning about the project, including the findings at the completion of the study, is important to individuals participating in a study.
Q: What should researchers refer to people living with mood disorders collectively as?
A: Some but not all people living with mood disorders are not comfortable with the term consumer. Using words like patient, client, or mental health community member are sometimes preferred options. Also, participants in mental health research do not like to be referred to as “subjects”. In any situations, using the term “those living with a mood disorder” is the best option.
Q: Is there a lack of participation due to a lack of interest in mental health research by those living with mood disorders?
A: People living with mood disorders are very interested in mental health research and the progress that can come from it. Overall, lack of participation results from assumptions that the person will not qualify for the study, reluctance to change current treatments, fears of compromising wellness, and a lack of awareness of the different types of existing studies. WeSearchTogether is working hard to ensure that potential participants have all the information they need to become involved in studies that fit their interests and needs.
Q: Do participants understand that mental health researchers are people who have personal investment and real life connection to mental illness?
A: Unfortunately, many participants view researchers as cold, distant, and not caring about that the people who participate in studies. The connection between researchers and the work that they do is not always clear. WeSearchTogether is working to share researchers’ stories on why they become involved in mental health research with potential participants. If you would like to share your story, please contact us at info@WeSearchTogether.org.
Connecting with Participants
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