Exploring trends and attitudes towards consent for benefits and income data linkage in BiBBS participants.

Since September 2021, the BiBBS recruitment team have been trialling an approach to facilitate data sharing between BiBBS and the Department for Work and Pensions (DWP) to help us better understand the impact of BiBBS programmes on the financial health of the community. Poverty and deprivation experienced by mothers and their families is linked to poor physical and mental health and can have long lasting effects.1 Financial difficulties for parents can cause mental health problems and chronic physical illness which affect parenting.2,3 By enhancing family livelihoods and financial health, this could directly improve the health and wellbeing of families, and reduce wider health inequalities in the long-term.4

Following normal recruitment into the BiBBS research study, mothers are asked whether they would also be willing to consent to link their data with DWP to better under the impact of BiBBS programmes on financial health. Mothers are provided with a separate information sheet and consent form in order to explain why we are asking to link their data and to explicitly gain consent for this. If the mother does not wish to provide consent to data linkage, her reason for not wishing to consent is recorded as a free text response.

It is recognised that data sharing and linkage, particularly around financial data, is a sensitive issue. It well recognised that consent for benefits and income data linkage for research purposes is much lower than for other forms of data linkage.5,6 However, it is not well understood what impacts upon decisions to consent and the attitudes towards consent, particularly in ethnic minority groups.

It is hoped that this piece of work will help us to better understand who is more and less willing to consent to benefits and income data linkage and whether this varies by key demographics, existing levels of financial security and mental health in the BiBBS cohort. In the future, it may also help to compare consent rates and trends between alternative models for obtaining consent for sensitive data, should these be trialled.