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Designing Granular Consent Tools for Sensitive Health Data: Challenges, User Needs, and Stakeholder Guidance
Reid A Cooper1, Mengyi Wei1,2, Martha Kaiser1
1Arizona State University, College of Health Solutions, United States.
Applied Clinical Informatics
|July 14, 2026
Summary
Developing patient-controlled health data sharing tools requires patient-centered design, clear communication, and addressing trust barriers. Granular, computable consent is key for equitable and safe data sharing.
Area of Science:
- Health Informatics
- Patient Data Privacy
- Digital Health Tools
Background:
- Meaningful patient control over sensitive health data sharing is crucial in healthcare.
- Existing consent mechanisms often lack granularity and patient-centricity.
- Developing effective patient-facing consent tools is a significant challenge.
Purpose of the Study:
- To examine challenges, design requirements, and implementation considerations for a granular, patient-facing consent tool.
- To understand how to enable meaningful patient control over sensitive health data sharing.
- To identify stakeholder perspectives on developing advanced health data consent systems.
Main Methods:
- Conducted semi-structured interviews with 16 expert stakeholders (clinical, health IT, governance, policy).
- Utilized the National Science Foundation I-Corps framework and collaborated with Shift.
- Analyzed interview transcripts using thematic analysis with deductive and inductive coding.
Main Results:
- Patient-centered, trauma-informed design and plain language are essential for meaningful consent (75%).
- Barriers include lack of trust, stigma, workflow burden, and EHR technical limitations (63%, 56%).
- Granular, computable consent (50%) and interoperability standards like FHIR (19%) are important.
Conclusions:
- Effective consent management needs alignment between patient-centered design, technical computability, and governance.
- Integrating enforceable, transparent consent into workflows can reduce nondisclosure and support safety.
- Granular, patient-directed consent and computable standards promote trustworthy, equitable health data sharing.
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