Research Article: Towards a Data Sharing Culture: Recommendations for Leadership from Academic Health Centers

Date Published: September 2, 2008

Publisher: Public Library of Science

Author(s): Heather A Piwowar, Michael J Becich, Howard Bilofsky, Rebecca S Crowley

Abstract: Rebecca Crowley and colleagues propose that academic health centers can and should lead
the transition towards a culture of biomedical data sharing.

Partial Text: 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 [6]. 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.

The benefits of data sharing and reuse have been widely reported. We summarize them here,
from the perspective of an AHC.

Despite the anticipated benefits, sharing research data has yet to be widely adopted in
biomedicine [11,12]. 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.

We recognize that there are real and perceived impediments to sharing biomedical research
data. Some individual donors may have personal interests in privacy and confidentiality that
exceed their desire to contribute to new methods of detecting and treating disease.
Investigators may restrict access to data to maximize their professional and economic
benefit. Academic health centers may view data sharing as a threat to intellectual property,
possibly impeding entrepreneurial spin-offs and technology transfers that bring revenue and
act as incubators for future research. AHCs may also worry that the data could be used to
critique their health care practices rather than advance the research frontier. Industrial
sponsorship can hinder plans for sharing data, and the regulatory environment may
necessitate stringent oversight to ensure compliance and minimize risk.



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