Why do participants consent to data linkage?

27 May 2015

 

Almost 80 per cent of Millennium Cohort Study (MCS) parents regularly consented to allow health records of their children to be linked to survey results.

Linking survey results to medical records can help to advance the understanding of health and disease and change the way that conditions are managed and treated.

However, a study by the UCL Institute of Education shows that parents’ decisions were not necessarily motivated by a desire to help advance scientific research, but rather were influenced by their circumstances at the time of the interview, and by the survey interviewers.

“The likelihood of consent and of changing decisions over time are mostly related to events happening in the respondents’ lives, such as health problems or divorce. The survey interviewers can also have an impact on parents’ willingness to consent,” the researchers explain.

“For the majority of parents, consent is not determined by personal convictions, such as their belief in the importance of scientific research.”

The study’s authors, Tarek Mostafa and Richard D Wiggins, examined consent rates of more than 12,000 families taking part in the MCS when the children were 9 months, 3 and 7 years.

The research, which is thought to be among the first longitudinal analysis of its kind, shows that consenters are more likely to have managerial jobs, belong to households with two employed parents, and own their homes.

The study also found that participants from low income families and ethnic minority groups were less likely to consent to survey and administrative data linkage.


Read the full paper:

“How consistent is respondent behaviour to allow linkage to health administrative data over time?” by Tarek Mostafa and Richard D Wiggins, is the latest working paper to be published by the UCL IOE’s Centre for Longitudinal Studies.