How do we navigate the sensitive and often misunderstood use of data on child abuse and neglect, for research purposes?
Nationally and internationally, there has been a growing recognition of the importance of identifying, documenting and reporting suspected and confirmed child maltreatment.
We wanted to ask people their general thoughts and opinions about what collecting and linking child maltreatment data for research purposes.
Dr Gwenllian Moody, from the University of Cardiff emphasised the ground-breaking nature of her research in her comment, “This is the very first study about people’s attitudes towards colleting and linking data on child abuse and neglect. It is important that we open up this discussion because accessing routine data is important for researchers to study this topic further.
The members of the public who took part in focus groups for the study included mothers, young people who had some experience of being in the care system, and professionals who were responsible for recording child maltreatment data such as GPs and teachers.
There emerged three major themes.
First was discussion on providing consent for the actual collection of child maltreatment data, specifically under what conditions were people willing to give their consent and what influenced this.
The second theme was about trust around the security and validity of maltreatment data, including who the organisations and individuals are that provide and use such data, and whether the information that organisations present people is useful in helping them to decide if they are happy for the data to be collected.
The third theme centred on what people thought the benefits of this type of research were, and the role that researchers took in child protection.
The results of the focus group are extremely useful in understanding the concerns of the public in relation to researchers using particularly sensitive data, such as child maltreatment data, and highlighted people’s desire to have personal choice whether to give consent for data collection, especially when they were asked to provide consent on behalf of somebody else (e.g. their child).
Having the data anonymised to protect a child’s identity was considered a good idea overall. However, by doing so, it raises the question that, if the data showed that a child was potentially being harmed, then it wouldn’t be possible to act upon the findings when that child cannot be identified.
There was also a level of concern about researchers accessing data from social services and what these records might contain, particularly from participants with personal experience of the care system.
Overall, the study has highlighted an ongoing issue within Population Data Science of a general lack of public understanding and awareness about access and use of data by researchers, and what they are permitted to see in order to conduct a study. The importance of including members of the public to help guide researchers about how to provide study information and give input on any concerns participants might have about taking part, cannot be underestimated.
Dr Gwenllian Moody, Research Associate, Centre for Trials Research, Cardiff University, Neuadd Meirionnydd, Heath Park, Cardiff
Moody, G., Cannings-John, R., Hood, K. and Robling, M. (2022) “Attitudes towards the collection and linkage of maltreatment data for research: A qualitative study”, International Journal of Population Data Science, 7(1). doi: 10.23889/ijpds.v7i1.1693.