Too Much or Too Little? How Much Control Should Patients Have Over EHR Data?

Area of Science:

• Health Informatics
• Bioethics
• Health Policy

Background:

• Electronic health records (EHRs) aim to unify fragmented US healthcare.
• Patient data control versus healthcare provider access presents a key challenge.
• Federal Trade Commission's Fair Information Practice Principles guide data handling.

Purpose of the Study:

• To explore patient rights in controlling access to their EHR data.
• To balance patient privacy with healthcare professionals' need for information.
• To inform policy discussions on EHR data sharing and patient consent.

Main Methods:

• Analysis of patient data control within the EHR context.
• Examination of the Fair Information Practice Principles' application to EHRs.
• Review of policy considerations for patient data sharing.

Main Results:

• EHR data control rights extend to patients and parents of minors.
• Patients need clear information on data sharing questions and risks.
• Understanding the impact of decisions on data breach risk is crucial.

Conclusions:

• Policy development must address specific questions for patient data sharing.
• Informed consent requires patient understanding of risks and consequences.
• Resource implications and costs of different data control approaches require evaluation.