Evidence Library

Abstract: This study involved contacting the research groups running 84 different cohort studies to ask about their practice in engaging and involving study participants. The authors were particularly interested in the question of seeking consent for participation from young cohort members as they grow older. The findings showed that most cohorts make an effort to keep participants in engaged, for example through sending newsletters, birthday cards and summaries of findings. Much smaller numbers consult their participants and usually on a one-off basis. The barriers to consultation were reported to be: • concerns about the impact on the quality of research • ethical constraints • resource limitations • attitudes to involvement – lack of importance • previous adverse experience.

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Categories: health
public health
social care
all
nature and extent of public involvement in research
journal article

Date Entered: 2013/10/29

Date Edited: 2013/10/29