Description

Accessing and disseminating longitudinal data: Protocols and policies

CATHERINE CHOJENTA, ROSEMARY MOONEY AND PENNY WARNER-SMITH

Research Centre for Gender, Health and Ageing, The University of Newcastle, Callaghan, NSW, Australia

ABSTRACT

The development of clear rules and regulations around the access to and publication of data is imperative to the ongoing integrity of a longitudinal study. Careful planning of policies and protocols should be undertaken at the commencement of the study, and refined over time to incorporate the growing availability of data, and increasing numbers of external collaborators. In this paper we draw on the experience of developing data access protocols for the Australian Longitudinal Study on Women’s Health (ALSWH). We discuss the development of these policies and the organisational structure that manages them. We also discuss the record keeping practices implemented by the ALSWH and how the information stored can be used for both the review of study themes and also the production of research summaries and reports.

Keywords: Longitudinal studies; survey methods; research administration