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J Med Internet Res. 2019 Jan 17;21(1):e11507. doi: 10.2196/11507.

Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line.

Author information

1
Department of Psychiatry, University of Rochester Medical Center, University of Rochester, Rochester, NY, United States.
2
Department of Pediatrics, University of Rochester Medical Center, University of Rochester, Rochester, NY, United States.
3
Yale School of Management, Yale University, New Haven, CT, United States.
4
Yale School of Public Health, Yale University, New Haven, CT, United States.
5
Crisis Text Line, New York, NY, United States.
6
Department of Psychiatry and Behavioral Sciences, Northwestern University, Chicago, IL, United States.
7
Department of Psychiatry, Columbia University, New York, NY, United States.
8
Department of Epidemiology, Columbia University, New York, NY, United States.
9
National Center for Ethics in Health Care, Veterans Health Administration, Washington, DC, United States.
10
Harvard Medical School, Harvard University, Boston, MA, United States.
11
Department of Internal Medicine, Yale University, New Haven, CT, United States.
12
Center for Bioethics, Yale University, New Haven, CT, United States.
13
Institute for Social Research, University of Michigan, Ann Arbor, MI, United States.
14
School of Nursing, University of Michigan, Ann Arbor, MI, United States.
15
Center for Internet and Society, Stanford Law School, Palo Alto, CA, United States.
16
Henry J Kaiser Family Foundation, Menlo Park, CA, United States.
17
Department of Psychiatry and Human Behavior, Alpert Medical School, Brown University, Providence, RI, United States.
18
Emergency Digital Health Innovation Program, Department of Emergency Medicine, Alpert Medical School, Brown University, Providence, RI, United States.

Abstract

Data sharing between technology companies and academic health researchers has multiple health care, scientific, social, and business benefits. Many companies remain wary about such sharing because of unaddressed concerns about ethics, data security, logistics, and public relations. Without guidance on these issues, few companies are willing to take on the potential work and risks involved in noncommercial data sharing, and the scientific and societal potential of their data goes unrealized. In this paper, we describe the 18-month long pilot of a data-sharing program led by Crisis Text Line (CTL), a not-for-profit technology company that provides a free 24/7 text line for people in crisis. The primary goal of the data-sharing pilot was to design, develop, and implement a rigorous framework of principles and protocols for the safe and ethical sharing of user data. CTL used a stakeholder-based policy process to develop a feasible and ethical data-sharing program. The process comprised forming a data ethics committee; identifying policy challenges and solutions; announcing the program and generating interest; and revising the policy and launching the program. Once the pilot was complete, CTL examined how well the program ran and compared it with other potential program models before putting in place the program that was most suitable for its organizational needs. By drawing on CTL's experiences, we have created a 3-step set of guidelines for other organizations that wish to develop their own data-sharing program with academic researchers. The guidelines explain how to (1) determine the value and suitability of the data and organization for creating a data-sharing program; (2) decide on an appropriate data sharing and collaboration model; and (3) develop protocols and technical solutions for safe and ethical data sharing and the best organizational structure for implementing the program. An internal evaluation determined that the pilot satisfied CTL's goals of sharing scientific data and protecting client confidentiality. The policy development process also yielded key principles and protocols regarding the ethical challenges involved in data sharing that can be applied by other organizations. Finally, CTL's internal review of the pilot program developed a number of alternative models for sharing data that will suit a range of organizations with different priorities and capabilities. In implementing and studying this pilot program, CTL aimed both to optimize its own future data-sharing programs and to inform similar decisions made by others. Open data programs are both important and feasible to establish. With careful planning and appropriate resources, data sharing between big data companies and academic researchers can advance their shared mission to benefit society and improve lives.

KEYWORDS:

cooperative behavior; crisis intervention; data sharing; ethics, business; industry; information dissemination; privacy; technology; text messaging

PMID:
30664452
DOI:
10.2196/11507
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