Since QDR’s founding in 2014, we have gained an increasing appreciation for the power and complexity of the academic  “ecosystem” comprising the various institutions that create and disseminate knowledge. Funders, disciplinary associations, journals and publishers, and units at colleges and universities such as Ethics Boards and Sponsored Research Offices, all shape social science research, and the sharing of the data that research produces.

In addition to the individual institutions we have encountered, our work has taught us the value of the collective organizations that – often behind-the-scenes – empower these stakeholders to have a significant and sustained impact on how scholarship is conducted. These collective organizations do extraordinary work, including acting as a conduit for members to share knowledge with each other, and helping to promulgate best practices. Increasingly, such organizations are working toward developing and promoting practical change that supports more open science.

SBERdatasharing hashtag

One of the collective organizations with which QDR has engaged, and from which we have learned a great deal, is PRIM&R (Public Responsibility in Medicine & Research, https://primr.org/about-us). PRIM&R is the premier professional organization for people working in the research oversight community, including with institutional review boards (IRBs) and human subjects protection programs (HRPPs) across the United States. Almost 50 years old, PRIM&R provides the research oversight community with leadership and expertise, seeking to ensure the academic inquiry of all types is conducted to the highest ethical standards.

QDR learned of PRIM&R when we convened a series of meetings between 2016 and 2018 that brought together repository personnel and IRB members and officials to examine the tension between pursuing more open social science and protecting the people whom scholars draw into their work (human subjects).  When workshop participants encouraged QDR to engage with PRIM&R, we eagerly did so, and were delighted to find a receptive interlocutor. Between the 2017 and 2018 meetings, we offered a brief presentation of our ongoing research on “working with sensitive research data” (WSRD) at the 2017 PRIM&R annual conference. We integrated the positive feedback we received into template guidance and consent text addressing data sharing explicitly and offering various options for sharing human subjects data responsibly and ethically.

In 2019, we held a PRIM&R-organized webinar and a workshop with invited IRB personnel at the organization’s “Social, Behavioral and Educational Research Conference”. Both focused on finding an optimal balance between data sharing and human participant protections. We highlighted the importance of incorporating into informed consent protocols explicit consent to different data-sharing scenarios, and collaborating closely with data repositories, which have expertise and technologies that enable safe data-sharing. Interacting with a broad set of IRB professionals has helped us understand better the challenges that IRBs face, and to work with them to envision solutions that span across universities.

Over the last few years, with support from the National Science Foundation (NSF), we have conducted an empirical study of IRBs’ views on how research data can be shared responsibly. In the course of that work, interview and focus group respondents mentioned the critical role that PRIM&R plays in spurring new conversations among its members and enabling the sharing of examples, especially of new practices.

One of PRIM&R’s core activities is maintaining a vibrant dialogue among its very active 4,000-person membership community, in part through its outstanding forum. Recently, in a collaboration between QDR and PRIM&R, a new hashtag was added to the forum, #SBERdatasharing (https://community.primr.org/home) We hope the hashtag will serve as an effective focusing mechanism for the many threads that concern data sharing questions.

Screenshots of first SBERdatasharing post: "#SBERdatasharing Reply This prompts me to ask, how do you prompt Pls/researchers to think about data sharing? We've done work around trying to get our systems and educational content to emphasize the "plan for future sharing during protocol design <-> check back to protocols if prompted for data dissemination" linkage. But as data sharing requirements increase I'm looking for more ways to encourage this. And to remind researchers that sharing data (appropriately) is a way to give back and increase the Justice of the study, especially if shared in a way the population can best benefit from. Is this even a topic of concern for most teams? I'm pretty new to PRIM&R membership, so, I'm sorry if I've missed a previous conversation about it. Increases in data sharing pressures are why I felt like I needed to join the PRIM&R community so it's great to see this conversation coming up."

We thank the PRIM&R organization, and its engaged members, for welcoming us into their dynamic dialogue on evolving standards and technologies for research and for safely sharing human participants data! While the forum itself is open to members only, if you have any ideas, questions or feedback for us on the topic of sharing sensitive research data, please do not hesitate to reach out to qdr@syr.edu.