Welcome to the discussion group about ethics and sharing individual-level research data. Please post to let us know about your experiences, questions and resources you've found or developed.
Elearning course on data sharing and ethics
This course looks at ethical issues and views about best practices in sharing individual-level research data in low and middle income settings.Learn more
Public Health Research Data Forum
The Public Health Research Data Forum brings together more than 20 funders of global health research from around the world who are working in partnership to increase the availability and use of health research data in ways that are equitable, ...Learn more
BMJ requires data sharing on request
From 1 July the BMJ extended its requirements for data sharing to apply to all submitted clinical trials.Learn more
Sharing data in outbreaks and public health emergencies
The World Health Organization held meeting in September 2015 to discuss global norms for sharing research data in public health emergencies - and calls were made earlier in the year to establish principles for rapid and responsible data sharing in ...Learn more
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 ...
The NIH would like stakeholder feedback by 10 December to inform development of a future data management and sharing policy. Read more
Research funders, regulators and researchers are increasingly calling for the sharing of individual-level data from biomedical and public health research. Despite its potential importance and the ethical arguments in favour of it, data sharing presents important ethical, social, and institutional challenges. This peer reviewed course outlines ethical aspects of sharing individual level research data and proposed best practices. It aims to be of value to those designing and reviewing individual research protocols where data sharing is anticipated, and to those developing institutional policies and processes for governing data sharing.
Upon completion of this course, you will have an understanding of what data management is and the purpose of a data management plan; factors to be considered in the design and type of a case report form; what should be taken into account when completing and data entering a case report form and closing the data set; considerations for data analysis and what is important when deciding on a data management system.
Systematic reviews and meta-analyses of individual participant data (IPD) have long been recognised as a gold standard approach. They offer many advantages over analyses that use aggregated data extracted from ...
Wellcome recognises that there’s a strong and growing consensus on the value of making research outputs – including datasets, publications and code – widely and rapidly available. However, data sharing ...