Improving the depth of data quality or increasing confusion? Reflections on a data analysis involving members of a self-help group for relatives of people living with dementia

Abstract

Background: Public involvement in research to improve data quality and to empower different stakeholders is good scientific practice, but rarely implemented across all research phases. Objective: This article reports on an attempt to involve members of a self-help group for relatives of people living with dementia as co-researchers in the data analysis in a short-term format. Methods: One researcher identified statements about assistive technologies from 17 interviews with people living with dementia and informal caregivers. Two researchers and six co-researchers independently assigned pre-defined values to these statements. Subsequently, we compared the values of the researchers and co-researchers. Results: The members of the self-help group identified four original values not considered by the researchers: consent, inclusion, participation and respect. Discussion: The involvement of co-researchers led to an improvement in the depth of data quality through the joint identification of values concerning assistive technology. Language barriers between researchers, co-researchers and interview participants impeded the data analysis. Conclusion: The challenges and benefits of a participatory data analysis shown here can provide a basis for recommendations for target group-specific research involvement. Our recommendations relate to the recruitment of co-researchers, requirements for conducting a participatory data analysis and the participation degree of people involved. Patient or Public Contribution: The group of co-researchers participating in the data analysis consisted of relatives of people living with dementia.