depend on associations. “When someone else I trust trusts you, I can also get in the door.”
Reemphasizing a point made by several other participants, Edwards noted that the promotion system in academic settings, which relies on individual credit for grants awarded and papers published, interferes with the establishment of trust relationships and can be antagonistic to data sharing. However, Edwards pointed to several developments that can allow rewards, acknowledgment, and attribution to coexist in a more open research system. The old models of medical research where data are kept close to our chest are beginning to crumble, she said, and new models can be built that still promote competition, but in a more open research space. Other industries are helping to drive more open systems and the democratization of data, such as the information technology industry’s move toward mobile and cloud computing. “This culture shift has happened already in other fields,” said Edwards. “Let’s move it into health research.”
One way to encourage openness is to stay grounded in traditional research ethics. The 1978 Belmont Report, subtitled Ethical Principles and Guidelines for the Protection of Human Subjects of Research, referred to respect for persons, beneficence, and justice (HEW, 1979). These principles also can be applied to the emergence of more open research systems. For example, respect for persons can be embodied in both partnerships and communication. As a concrete example, Edwards mentioned the simple step of thanking research participants. “I am taking an informal poll of researchers I work with on how often they just say thank you to the participants who are in their studies, and it is embarrassingly low numbers,” she said. “Simply saying thank you can go such a long way.”
Regulations provide a minimum standard for behavior, Edwards said, and researchers need to do more than just what regulations mandate. Thus, data-sharing policies can provide a scaffolding, but the research community needs to set standards of excellence and strive to meet those standards.
Planning for sharing participant-level data at the outset of a study is important, Ioannidis pointed out. A more difficult, or impossible, task is to unearth data after the paper describing those data has been published. Far