Designing Granular Consent Tools for Sensitive Health Data: Challenges, User Needs, and Stakeholder Guidance.

Reid A Cooper¹, Mengyi Wei^1,2, Martha Kaiser¹, Kelly Caine³, Daniel J Chavez⁴, Jeff Coughlin⁵, Kelly Davison⁶, Hannah K Galvin⁷, Steven Lane⁸, Alec Laws⁹, Christoph Ulrich Lehmann¹⁰, Panna Lossy¹¹, Maria D Moen¹², S Trent Rosenbloom¹³, Jacqueline Seitz¹⁴, Marianne Sharko¹⁵, Julia Skapik¹⁶, Raymonde Uy¹⁷, L Weaver¹⁸, Maria Adela Grando¹⁹

¹Arizona State University, College of Health Solutions, United States.

²Lander University, College of Nursing, Human Performance and Health Sciences, United States.

³Clemson University, Department of Computer Science, United States.

⁴Santa Cruz HIO, United States.

⁵American Medical Association, Deaprtment of Federal Affairs, United States.

⁶University of Victoria, School of Health Information Science, Canada.

⁷Harvard Medical School, Department of Pediatrics, United States.

⁸Health Gorilla Inc, United States.

⁹IDENTOS, Canada.

¹⁰UT Southwestern Medical, Clinical Informatics Center, United States.

¹¹Sutter Santa Rosa Regional Hospital, United States.

¹²MyDirectives, Inc., United States.

¹³Vanderbilt University Medical Center, Department of Biomedical Informatics, United States.

¹⁴Legal Action Center, United States.

¹⁵Weill Cornell Medicine, Population Health Sciences, United States.

¹⁶PurpleLab, United States.

¹⁷National Association of Community Health Centers, Division of Clinical Affairs, United States.

¹⁸University of Utah Health, Department of Biomedical Informatics, United States.

¹⁹Arizona State University Biodesign Institute, Department of Biomedical Informatics, United States.

PubMed PMC DOI PDF

Abstract

OBJECTIVE: This study aimed to examine perspectives on challenges, design requirements, and implementation considerations for developing a granular, patient-facing consent tool that enables meaningful control over sensitive health data sharing in real-world healthcare settings. METHODS: Guided by the National Science Foundation I-Corps framework and conducted in collaboration with Shift-a nationa…

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