NEW YORK (GenomeWeb News) – An international group of public and non-profit funding organizations have pledged to ensure that research data is shared more widely, which could benefit research, improve health outcomes, and save money, according to a joint statement issued by the funding entities this week.
The coalition of health science funding bodies said in the statement that even though the “importance of data sharing in advancing health is becoming increasingly widely recognized,” it "is not yet the norm within the public health research community." As a result, a lack of sharing is causing many researchers to waste money and time.
The seventeen signatories on the letter include the National Institutes of Health and other US agencies, the Bill and Melinda Gates Foundation; several European entities, such as the Wellcome Trust, INSERM, and Medical Research Councils UK; and representatives from Canada, Australia, and New Zealand.
In the near future, the partners aim to develop and promote data management standards that support open data sharing; ensure that funders and employers of researchers view data sharing as a professional achievement that can be an indicator of the success of the research; and to make certain that secondary data users respect the rights of those that produce and add value to data.
The group said it aims to be equitable, ethical, and efficient in carrying out its goals.
Regarding equitability, the group said that data-sharing approaches should balance the needs of researchers who generate and use data and other analysts who may want to re-use it, and those of communities and funders who expect health benefits from their studies.
To maintain ethical standards, the partners want to make sure individual privacy and the dignity of communities are protected while respecting the need to improve public health by making data useful.
And in order to maintain efficiency, the group said that data-sharing mechanisms should build on existing practices in order to minimize duplication and avoid competition.
Over the long term, the organizations plan to ensure that well-documented data sets are available for secondary analysis, and that data collected for health research is made available to the scientific community. The group also pointed to the need for researchers in developing countries to manage and analyze data locally and to be able to contribute to international analysis efforts.
The funding bodies also highlighted to the importance of archiving data sets that underpin research papers in peer-reviewed journals.
Lastly, the partners want to make sure that the resources and infrastructures that are necessary to support data management and archiving are developed and supported for the long term.
The full list of signatories to the letter include: the Agency for Healthcare Research and Quality; the Canadian Institute of Health Research; the Centers for Disease Control and Prevention; Deutsche Forschungsgemeinschaft; the Doris Duke Charitable Foundation; the Economic and Social Research Council; the Health Research Council of New Zealand; the Health Resources and Services Administration; the Hewlett Foundation; INSERM; the Medical Research Council UK; Australia's National Health and Medical Research Council; the National Institutes of Health; Substance Abuse and Mental Health Services Administration; the Wellcome Trust; the World Bank; and the World Health Organization.