Data Sharing for Research: A Compendium of Case Studies, Analysis, and Recommendations

Today, the Future of Privacy Forum (FPF) published a report on corporate-academic partnerships that provides practical recommendations for companies and researchers who want to share data for research. The Report, Data Sharing for Research: A Compendium of Case Studies, Analysis, and Recommendations, demonstrates how, for many organizations, data-sharing partnerships are transitioning from being considered an experimental business activity to an expected business competency.

Corporate data-sharing partnerships offer compelling benefits to companies, researchers, and society to drive progress in a broad array of fields. However, organizations have long faced complex commercial, legal, ethical, and reputational risks that accompany the activity and act as disincentives to sharing data for academic research.

This report contains eight case studies that look at specific corporate/academic data-sharing partnerships in depth, from initiation through the publication of research findings. These case studies illuminate practical challenges for implementing corporate data sharing with researchers. Some common themes that emerged from the case studies include:

• Successful data-sharing partnerships use Data-Sharing Agreements that require both the company and researchers to take steps to protect privacy. 
• Some of the challenges of data sharing include technical knowledge and infrastructure gaps between companies and researchers, and the continuing need for ethics and privacy review for industry-based research.
• Promising practices for data sharing include the use of Privacy Enhancing Technologies and company-created, public-facing data-sharing menus to facilitate new partnerships.
• While data sharing has significant costs and inherent risks, the risks can be managed, and the benefits to researchers, companies, and society make data sharing worth the effort.

This report builds upon prior FPF research, including the publication of The Playbook: Data Sharing for Research and the companion infographic in 2022. The case studies examine how data sharing works in a practical environment. By analyzing the case studies as a group, we arrived at recommendations for all parties interested in pursuing an ethical data-sharing partnership that protects against privacy risks.

For companies considering data sharing for research, we recommend the following: 

• Create a public webpage listing all data the company is willing to share, describe any requirements for potential data-sharing partnerships, and create a public form for researchers to ask questions. 
• Bolster privacy by using Privacy Enhancing Technologies (PETs), reduce data sensitivity through data minimization and aggregation, and include metadata as part of internal privacy reviews before sharing.
• Promote rigorous data governance by assigning multiple people with expertise to manage data sharing, connect core team members to the data-sharing team, and adapt Data Sharing Agreements to align with the company’s available budgetary and personnel support.
• Ensure researchers maintain authorial control over research methods, data analysis, interpretation, and publishing/communication venue. Where appropriate, companies may reserve the right to review data before publication to assess privacy risks and consult on the analytical limitations of the data.

For researchers interested in using data held by a company for research, we recommend the following:

• Proactively contact companies that may hold data of interest and maintain continuous communication, especially about publication expectations.
• Cultivate internal partnerships by involving the university general counsel early on and checking to see if the university has a standard Data Sharing Agreement. Contact the university’s Research Integrity Office and Information Technology Office before any data is shared, and consult the library for research support.
• Receive training on how to integrate Privacy Enhancing Technologies in research and include privacy-related technical infrastructure in all funding proposals.
• Coordinate with the company about any requirements for publishing, data sharing, data retention, and citation while maintaining academic independence.

You can access each of our individual case studies at these links:

• AIMS Collaboratory and External Partners
• Gravy Analytics and the University of Florida
• IBM and External Partners
• Johnson & Johnson and The YODA Project
• Khan Academy and External Partners
• LinkedIn and External Partners
• Meta and External Partners
• Microsoft and the United Nations

Download accessible versions of these documents here.

FPF offers the Ethics and Data in Research Working Group, which analyzes US legislation impacting research and data, discusses ethical and technological research challenges, and develops best practices for privacy protection, risk reduction, and data sharing in research. Learn more and join the Working Group here.

For inquiries about this report, please contact Shea Swauger, Senior Researcher for Data Sharing and Ethics, at [email protected].

This project is supported by the Alfred P. Sloan Foundation, a not-for-profit grantmaking institution whose mission is to enhance the welfare of all through the advancement of scientific knowledge.