Suchergebnisse

Context and aims Researchers increasingly need to share their data. This requires both adherence to Australia's robust privacy legislation and preparation of comprehensive data management plans. This paper outlines the data-sharing issues managed by IMPACT, a 6-site Canadian-Australian collaborative research program designed to improve access to primary health care for vulnerable individuals. Each site used a common protocol to evaluate its own intervention, with the aim of pooling data across the sites. Ethics applications were submitted in each site.MethodsConsultations were conducted with key informants within one Australian university (UNSW Sydney) and external informants to develop a data sharing plan. The authors reflect upon the process and have identified lessons for others wanting to share data.Findings Data sharing for a multi-site multi-country study was complex. University policies and infrastructure have been changing, not all sharing tools were available and support personnel were still learning how to implement policies related to data sharing. Furthermore, site-specific ethics applications did not specify that the data was part of a larger study. Consequently, the other 5 sites were deemed as external.We needed multiple consultations with ethics, IT, and data governance units to understand data classification (patient data is inherently sensitive), who needed access, and how access could be enabled. Bringing these support units together assisted a common understanding – this had not been previous practice. Innovative contribution to policy, practice and/or researchEarly consultations with university ethics and data governance units is recommended for planning data sharing – particularly for patient data and complex projects.

Context: Primary health care (PHC) researchers increasingly need to share their data. This requires adherence to privacy laws, approval by ethics committees and comprehensive data management plans. IMPACT is a 6-site Canadian-Australian collaborative research program designed to improve access to primary health care for vulnerable individuals. Each site used a common protocol to design and evaluate its own intervention, with the aim of pooling data across the sites. Ethics applications were submitted in each site. Sharing data across the sites proved a challenge. Objective: This paper describes the data-sharing issues managed by IMPACT. Design: Consultations were conducted with key informants and documents were reviewed to develop a data sharing plan. Key informants had expertise in data governance, IT and/or research ethics in medical research. Documents included universities policies and submissions to ethics committees. The authors reflected upon the process and identified lessons for PHC researchers. Setting: IMPACT study sites in 3 Australian jurisdictions (New South Wales, Victoria, South Australia) and 3 Canadian jurisdictions (Alberta, Quebec, Ontario). Results: Data sharing for a multi-site multi-country study was complex. Privacy legislation and university policies were protective of patient privacy, particularly in Australia. The site-specific ethics applications had not specified that the data was part of a larger study. Consequently, the other sites were deemed as external. Multiple consultations with ethics, IT, and data governance units were required to clarify the data classification (patient data is inherently sensitive), who needed access, and how access could be enabled. Bringing support units together assisted a common understanding – this had not been usual practice. Conclusions: Early consultations with university ethics and data governance units is recommended for planning data sharing – particularly for patient data and complex projects.