Towards a Data Sharing Culture: Recommendations for Leadership from Academic Health Centers. (texto completo, clique aqui)
Sharing biomedical research and health care data is important but difficult. Recognizing this, many initiatives facilitate, fund, request, or require researchers to share their data. These initiatives address the technical aspects of data sharing, but rarely focus on incentives for key stakeholders. Academic health centers (AHCs) have a critical role in enabling, encouraging, and rewarding data sharing. The leaders of medical schools and academic-affiliated hospitals can play a unique role in supporting this transformation of the research enterprise. We propose that AHCs can and should lead the transition towards a culture of biomedical data sharing.
Benefits of Data Sharing for Academic Health Centers
The benefits of data sharing and reuse have been widely reported. We summarize them here, from the perspective of an AHC.
The predominant benefit of data sharing is accelerated scientific progress. Advances are clearly valuable to an AHC when translated into improved patient outcomes, reduced research costs, and decreased time in moving discoveries from the bench to the bedside.
Of more immediate benefit to AHCs and their researchers, sharing data increases the visibility and relevance of research output. Sharing data generates opportunities for additional publications through collaboration, and may increase the citation rate of primary publications. Since publication history and citation impact are often considered in future funding decisions, these benefits are likely to accelerate research programs, and thus enhance the reputation of the academic institutions.
Data sharing can also benefit an AHC in its roles of educator and employer. Health care professionals trained in clinical informatics benefit from exposure to real-world data. By embracing data sharing goals, an AHC becomes more appealing to cutting-edge researchers, and thereby more able to recruit the talent required for future successes.
Finally, the widespread adoption of a data sharing culture needs leaders, and thus provides an opportunity for AHCs to demonstrate excellence.
A Leadership Role
Despite the anticipated benefits, sharing research data has yet to be widely adopted in biomedicine. Through their interwoven roles in education, research, and policy, AHCs can lead the development of best practices for establishing a data sharing culture. Practical steps with potentially powerful impact are discussed below and summarized in Box 1.
Box 1: Recommendations for Academic Health Centers to Encourage Data Sharing
Commit to sharing research data as openly as possible, given privacy constraints. Streamline IRB, technology transfer, and information technology policies and procedures accordingly.
Recognize data sharing contributions in hiring and promotion decisions, perhaps as a bonus to a publication's impact factor. Use concrete metrics when available.
Educate trainees and current investigators on responsible data sharing and reuse practices through class work, mentorship, and professional development. Promote a framework for deciding upon appropriate data sharing mechanisms.
Encourage data sharing practices as part of publication policies. Lobby for explicit and enforceable policies in journal and conference instructions, to both authors and peer reviewers.
Encourage data sharing plans as part of funding policies. Lobby for appropriate data sharing requirements by funders, and recommend that they assess a proposal's data sharing plan as part of its scientific contribution.
Fund the costs of data sharing, support for repositories, adoption of sharing infrastructure and metrics, and research into best practices through federal grants and AHC funds.
Publish experiences in data sharing to facilitate the exchange of best practices.
Sharing biomedical research and health care data is important but difficult. Recognizing this, many initiatives facilitate, fund, request, or require researchers to share their data. These initiatives address the technical aspects of data sharing, but rarely focus on incentives for key stakeholders. Academic health centers (AHCs) have a critical role in enabling, encouraging, and rewarding data sharing. The leaders of medical schools and academic-affiliated hospitals can play a unique role in supporting this transformation of the research enterprise. We propose that AHCs can and should lead the transition towards a culture of biomedical data sharing.
Benefits of Data Sharing for Academic Health Centers
The benefits of data sharing and reuse have been widely reported. We summarize them here, from the perspective of an AHC.
The predominant benefit of data sharing is accelerated scientific progress. Advances are clearly valuable to an AHC when translated into improved patient outcomes, reduced research costs, and decreased time in moving discoveries from the bench to the bedside.
Of more immediate benefit to AHCs and their researchers, sharing data increases the visibility and relevance of research output. Sharing data generates opportunities for additional publications through collaboration, and may increase the citation rate of primary publications. Since publication history and citation impact are often considered in future funding decisions, these benefits are likely to accelerate research programs, and thus enhance the reputation of the academic institutions.
Data sharing can also benefit an AHC in its roles of educator and employer. Health care professionals trained in clinical informatics benefit from exposure to real-world data. By embracing data sharing goals, an AHC becomes more appealing to cutting-edge researchers, and thereby more able to recruit the talent required for future successes.
Finally, the widespread adoption of a data sharing culture needs leaders, and thus provides an opportunity for AHCs to demonstrate excellence.
A Leadership Role
Despite the anticipated benefits, sharing research data has yet to be widely adopted in biomedicine. Through their interwoven roles in education, research, and policy, AHCs can lead the development of best practices for establishing a data sharing culture. Practical steps with potentially powerful impact are discussed below and summarized in Box 1.
Box 1: Recommendations for Academic Health Centers to Encourage Data Sharing
Commit to sharing research data as openly as possible, given privacy constraints. Streamline IRB, technology transfer, and information technology policies and procedures accordingly.
Recognize data sharing contributions in hiring and promotion decisions, perhaps as a bonus to a publication's impact factor. Use concrete metrics when available.
Educate trainees and current investigators on responsible data sharing and reuse practices through class work, mentorship, and professional development. Promote a framework for deciding upon appropriate data sharing mechanisms.
Encourage data sharing practices as part of publication policies. Lobby for explicit and enforceable policies in journal and conference instructions, to both authors and peer reviewers.
Encourage data sharing plans as part of funding policies. Lobby for appropriate data sharing requirements by funders, and recommend that they assess a proposal's data sharing plan as part of its scientific contribution.
Fund the costs of data sharing, support for repositories, adoption of sharing infrastructure and metrics, and research into best practices through federal grants and AHC funds.
Publish experiences in data sharing to facilitate the exchange of best practices.
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