There are many benefits of data sharing including scientific advancement and improving health. There are also many explicit ethical motivations to sharing data such as:
- The importance of maximising the value and utility of data.
- The promotion of scientific values, advancement of best practices in research conduct, analysis and reporting.
- The demonstration of respect for research participants.
- The promotion of a public good.
In order to maximise the benefits and limit any potential risks, IDDO works with the research community to protect the participants and communities where data originate. We have systems and support in place to protect privacy and confidentiality, ensure that appropriate consent and approval of responsible research ethics committees is in place, balance the interests of different stakeholders in data sharing, promote public trust in research, and make best use of limited resources.
How it works
All clinical trial data submitted to the platform must have been collected with the approval of the responsible ethics committee(s), using an informed consent process or waiver of consent approved by the same committee(s). Data submitted to the platform are immediately encrypted at upload and stored on a secure, high-compliance server and verified by trained curation staff who ensure that no identifying information exists on the dataset.
Data are shared only with qualified researchers for specific purposes that have a health benefit. Data are shared under a data use agreement which contractually engages data requesters and their institutions to use the data only for the purpose requested and prevent them to make any attempt to re-identify patients.
IDDO reports to the Oxford Tropical Research Ethics Committee (OxTREC) who maintain oversight of the implementation of the platform.
As researchers based in lower-resource settings may have limited access to the resources needed to make use of shared data for secondary analysis, IDDO provides training to strengthen capacity in the research communities that generate the data. Research is encouraged through collaborative study groups which engage the primary researchers and supplement any resource gaps, such as statistics or manuscript writing, and a publication policy is in place to ensure appropriate recognition and increase the visibility of research undertaken in endemic countries.
Decisions on external access to data are managed by the responsible investigators and a Data Access Committee (DAC) formed of independent experts. This ensures that data are only shared with qualified researchers to address a knowledge gap of public health significance within the terms of the consent and approval under which the data were collected. The DAC is overseen and chaired by TDR (the Special Programme for Research and Training in Tropical Diseases), a model that has already been successfully implemented for WWARN - IDDO’s malaria platform.
The legally-binding IDDO Data Transfer Agreement forbids any further sharing of data outside of the research group designated under the agreement.