Evidence map›Paper›PMID 39842004›Full record

ArticleJournal of medical Internet research2025

Authors' Reply: Commentary on "Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line".

Anthony R Pisani, Carlos Gallo, Madelyn S Gould, Nitya Kanuri, John E Marcotte, Brian Pascal, David Rousseau, Megan L Ranney, Bob Filbin, Shairi Turner

Abstract readComment
In one paragraph

Article in Journal of medical Internet research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

10 authors.

Anthony R PisaniDepartment of Psychiatry, Center for the Study and Prevention of Suicide, University of Rochester Medical Center, University of Rochester, Rochester, NY, United States.ORCID 0000-0003-4698-8432
Carlos Gallo *Northwestern University, Evanston, IL, United States.ORCID 0000-0003-3270-8786
Madelyn S Gould *Department of Psychiatry, Columbia University, New York, NY, United States.ORCID 0000-0002-2881-9152
Nitya Kanuri *Chartis, San Francisco, CA, United States.ORCID 0000-0002-8708-4352
John E Marcotte *University of Michigan, Ann Arbor, MI, United States.ORCID 0000-0002-6199-4454
Brian Pascal *Stanford University, Palo Alto, CA, United States.ORCID 0000-0001-9171-5084
David RousseauHenry J Kaiser Family Foundation, Menlo Park, CA, United States.ORCID 0000-0001-9468-8886
Megan L RanneyYale School of Public Health, New Haven, CT, United States.ORCID 0000-0002-8450-9642
Bob FilbinMeta (United States), Menlo Park, CA, United States.ORCID 0000-0002-1330-245X
Shairi Turner *Crisis Text Line, New York, NY, United States.ORCID 0000-0003-3559-5940

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

We appreciate Reierson's thoughtful commentary on our 2019 paper, which described our experiences, ethical process, judgment calls, and lessons from a 2016-2017 data-sharing pilot between Crisis Text Line and academic researchers. The commentary raises important questions about the ethical conduct of health research in the digital age, particularly regarding informed consent, potential conflicts of interest, and the protection of vulnerable populations. Our article focused specifically on the noncommercial use of Crisis Text Line data for research purposes, so we restrict our reply to points relevant to such usage. While we acknowledge the limitations of Crisis Text Line's Terms of Service as a means of informing users about data sharing for research, we maintain that our guidelines were ethically sound and aligned with well-established practices for institutional review board (IRB) review and researcher training. We emphasize the critical role of IRBs in ensuring that research involving vulnerable populations, including minors, is conducted ethically and with appropriate safeguards. Regarding potential conflicts of interest, we argue that unpaid, nonfiduciary advisory board service for a nonprofit organization does not constitute a conflict requiring disclosure. The transparent nature of our collaboration with Crisis Text Line, as evidenced by the authorship and acknowledgments in our paper, further underscores our commitment to ethical research practices. We recognize the complexity and evolving nature of the challenges surrounding data-sharing partnerships in digital health research. As the field progresses, we remain committed to ongoing, transparent engagement and to refining best practices in collaboration with colleagues, stakeholders, and the public. Our response aims to provide clarity and context for the concerns raised in the commentary while reaffirming the integrity and value of our original work. Ultimately, we maintain that our paper contributed meaningfully to the ongoing discourse on ethical data sharing and laid the groundwork for future improvements in this critical area of digital health research.

Indexed as

ConfidentialityInformation DisseminationPrivacyConflict of InterestHumansInformed ConsentPilot Projectscooperative behaviordata sharingdigital dataethicstechnologytext messaging

Identifiers

PMID39842004
PMCPMC11799806

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.