Data sharing FAQs

What is CRUK's data sharing and preservation policy?

The policy states our expectation that the researchers we fund should make their research data as widely available and with as few restrictions as possible, while maximising patient benefit. It also highlights the need for all researchers to plan how they will manage and share their data. Investigators will be asked to provide a data management and sharing plan as part of a funding application.

To whom does this policy apply?

It is applicable to all candidates seeking funding from CRUK after 1 April 2009.

Who benefits from data sharing?

Managed data sharing can benefit investigators, the wider scientific community, funding agencies and the public. We believe that helping to make research data more readily available will reinforce open scientific enquiry, stimulate new investigations and analyses and thus maximise the value of the research we fund.

Which scientific areas and type(s) of data can be shared?

Data can be shared in all research areas where it is cost effective. There is a particularly strong scientific case with studies that generate large volumes of data that may yield further findings from analysis outside the scope of the original investigation.

Does data sharing apply only to published data?

No, the policy encompasses all high quality data from funded research that can be shared regardless of whether they have been used in a publication.

How does the data sharing policy relate to CRUK's policies on intellectual property?

We support the appropriate protection and use of patents and other intellectual property rights to maximise the opportunity to benefit patients. We expect our researchers (with the support of the Cancer Research Horizons team) to manage and protect the intellectual property in their research, so that it can be used for public benefit. The data management and sharing policy does not alter this requirement. Data should not be shared or disclosed before a patent can be filed on an invention arising from research it funds. If any researcher suspects that an invention has or may be made they are expected to notify their technology transfer office and the Cancer Research Horizons team, and to defer sharing any relevant data until the situation has been reviewed.

My research is translational and needs to be protected and/or commercialised. How do I deal with data sharing?

We recognise that certain types of research, particularly with a translational focus, are more likely to result in patentable inventions which can be developed further to deliver patient benefit, or to result in commercial collaborations. As such, you should keep the Cancer Research Horizons team informed of all developments where there might be a potential for commercial interest, and in particular prior to any data sharing. It may be necessary to delay data sharing and modify any data sharing plan to ensure that patient benefit can be maximised.

My research seeks supports from both the public and private sectors. How do I deal with the sharing of data?

Where research is funded by a commercial sponsor, restrictions on data sharing may apply in arrangements agreed with the sponsor. Any such restriction(s) should be highlighted in the data management and sharing plan. In the event that you apply for or receive commercial funding for any part of research that we support, you should advise the Cancer Research Horizons team of the situation without delay.

What is the timescale for sharing data? Can I delay sharing until publication?

The latest point at which data should be shared is:

• Acceptance for publication of the results upon which the data is based, when no third party agreements restrict sharing.
• At a defined point that is the accepted procedure for the research area. For example with crystallography, there is an agreed 12-month delay between publishing the first paper on a structure and making the co-ordinates public.
• After all relevant patents are filed or a decision is made not to file a patent.

Investigators should aim to release data earlier than this if possible - particularly when it would be of benefit to the wider research community.

What do I need to include in my applications and where do I put the information about data sharing?

A data management and sharing plan should include concise plans for data sharing and the timeframe or explain why data sharing is not possible or appropriate. It is however recognised that plans for data sharing and timeframes might change during the course of the research and any such changes should be communicated to CRUK.

Further information can be found in our Data Sharing Guidelines. A box for completing a data management and sharing plan is incorporated into the grant application form or, for Population Research Committee schemes, provided as a separate document.

How will my data sharing plan be assessed and will it affect the outcome of my application?

It will be assessed by the funding committee. If the funding committee is not satisfied with the plan, you may be asked to make revisions before a grant award letter is issued.

Will CRUK provide funds for data sharing?

We regard the management and sharing of data generated through our funded research as a fundamental component of good scientific practice. Therefore, applicants may include proportionate, relevant data management and sharing activities as a running cost within applications. Funds will need to be fully justified and costed appropriately.

How will CRUK monitor adherence to the data sharing policy?

The funding committees monitor data management and sharing plans through the committee's grant review process and the end of grant report. However, we understand that an investigator may need to adapt the method and timelines for sharing during the course of the study - for example when intellectual property arises (see our Data sharing Guidelines).

How can I balance data sharing with the need to safeguard research participants?

All research involving human participants, or data or samples derived from human participants (such as cohort studies, clinical trials etc.), must include appropriate safeguards to protect the privacy of research participants. You must ensure that the necessary patient consent is obtained prior to data sharing.

What are the responsibilities of researchers and others who access and use data?

We believe that data sharing for the benefit of the research community as a whole will only proceed if those using the data also adopt good research practice. To ensure that data is used appropriately investigators may consider implementing a data sharing agreement that indicates the criteria for data access and conditions for research use. It may incorporate privacy and confidentiality standards, as needed, to ensure data security at the recipient site, protect intellectual property rights and prohibit manipulation of data.