Stakeholders for data sharing and the importance to share

Who is a stakeholder?

Sharing research data within the international scientific community is of increasing importance for research propagation and value. However, the ethical and social challenges this presents, particularly in the context of structural inequities and varied capacity in international research is of concern.

The involvement of the public and other stakeholders is essential to building locally responsive research policies, including data sharing. Stakeholders are individuals, groups, or organizations that are affected by or can affect a particular action undertaken by others. Biobanks, data repositories and other such central storage facilities or organisations encompass a number of different stakeholders such as donors, researchers, research institutions, regulatory bodies, funders, and others. These stakeholders can potentially have a strong influence on the organization and operation of any sample or data collection. A sound strategy for stakeholder engagement is therefore essential.

As such, for more and less research-experienced stakeholders, ethical research data sharing is likely to rest on the development and implementation of appropriate trust-building processes, linked to local perceptions of benefits and challenges.

Stakeholders involved in clinical research have different roles/responsibilities in the process of data and sample sharing toward the common goal of research and improving patient benefits. In general, the sharing process (Figure 1) can be defined in a number of iterative steps; donors providing data or samples to the collector; the collector providing the samples and/or data to the sponsor, who stores them in a database and/or biobank; data providers (sponsors of clinical study or database or biobank); data provider making data or samples upfront available, or requesters finding the data or material, requesting access via intermediary or directly to the provider, negotiating, and-upon agreement-receiving the requested data or material by the requester.

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Figure 1 – Chain of stakeholders involved in the process of sharing clinical patient data and samples. Source: Frontiers

Why share research data

Research data are a valuable resource, usually requiring much time and money to be produced. Many data have a significant value beyond usage for the original research. Data sharing benefits the researcher, research sponsors, data repositories, the scientific community, and the public. It encourages more connection and collaboration between scientists, and better science leads to better decision making. Data sharing is typically encouraged within the scientific community, but it requires a great deal of effort, resources, and collaboration. Preparing data to be shared takes time and careful documentation of the research process and the data results. Sharing research data:

• Encourages scientific enquiry and debate
• Promotes innovation and potential new data uses
• Leads to new collaborations between data users and data creators
• Maximises transparency and accountability
• Enables scrutiny of research findings
• Encourages the improvement and validation of research methods
• Reduces the cost of duplicating data collection
• Increases the impact and visibility of research
• Promotes the research that created the data and its outcomes
• Can provide a direct credit to the researcher as a research output in its own right
• Provides important resources for education and training

The ease with which digital data can be stored, disseminated and made easily accessible online to users means that many institutions are keen to share research data to increase the impact and visibility of their research (Figure 2).

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Figure 2 – benefits to individual researchers, research communities and wider society of openly sharing research data. Source: Scientific data