Ethics and Best Practices in Sharing Individual-level Research Data

A new, open-access toolkit for researchers and data managers is released today, providing guidance, resources and an eLearning course about ethics and best practices of sharing individual-level health research data in Low and Medium Income Countries.

Data Sharing

Clinical research helps collect a lot of data through various studies, which are then managed and used for publications or to inform public health policies.

One of the issues faced though is that of data sharing between researchers and the rules and regulations surrounding it.
Data sharing can involve partner researchers/countries within the same study or trial (multi-countries studies) , within the same consortium (set of studies), or with external researchers wanting to have another look at the data after the study is finished and published.
Do you have experience of dealing with data sharing, how did you do it? Do you have rules and regulations in place that you follow to ensure data protection principles is upheld (eg. the data protection act in the UK)? How do you deal with identifiable vs non identifiable data.

From a different perspective, when sharing is possible, how do you technically do it. Do you simply zip and send, use dropbox or similar online tools, or do you have a commercial or custom built system? Do you follow any standards? How do you deal with security or does it not matter?

Another reason this is important is that most of the research is generally funded by public money and there is growing requirement from funders to ensure that data generated is shared . So some of us are already facing these issues, and sooner or later most institutions will be in similar situations.

For more tips and tricks visit the website Resource Centre for ethics and sharing individual-level research data.