Systematic archiving and access to health research data: rationale, current status and way forward
The report concludes that routine data archiving and sharing offers considerable benefits: the effectiveness and efficiency of health research could be increased and science and health-care policy could advance more rapidly. However, if the potential is to be realized equitably, especially in developing countries, advocacy and leadership are needed at both national and regional levels. The most effective way of achieving the ultimate goal of universal data archiving and sharing may be to adopt a gradual, multistage approach. Increased access to national databases hosted by statutory bodies can pave the way for data sharing by smaller, but nonetheless valuable, individual research databases. Research funders should encourage researchers to maximize the value of their databases and adopt consistent data standards and management strategies when designing new studies. The infrastructure, skills and standards needed for data archiving and sharing may be best developed through international partnerships and skill sharing, thereby avoiding the duplication of effort. The creation of good databases and good data management should be recognized as legitimate research activities by funders and academic culture alike, and developing countries should start building capacity in data management and analysis.