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. 2017 Apr 5;24(5):1036–1043. doi: 10.1093/jamia/ocx017

Table 2.

Goals and policy recommendations to address gaps in the patient domain

Domain Goal Policy recommendations
Patient Improve patient access to clinical data Clarify HIPAA to state that patients have a right to all data maintained by a covered entity’s designated record set or to a digital copy of their legal medical record through guidance by the Office for Civil Rights.
Include in EHR certification and provider accreditation that patient data is transmitted in a manner that preserves computability.
Improve patient access to data generated by mHealth and related technologies Extend HIPAA or HIPAA-like requirements to noncovered entities. If not politically viable, convene industry stakeholders to develop coordinated “codes of conduct.”
Monitor widespread and persistent market failures to address data inaccuracy and poor usability that put patients at risk.
Enable patient participation and contribution to care delivery and health management As the market for mHealth and other consumer-facing applications matures, encourage multistakeholder coordination of standards within classes of patient-generated health data and eventually incorporate into health IT certification standards.
More readily engage patients in research Through public-private collaboration, pursue a digital infrastructure, including commercial EHRs, that enables machine-readable consent and specimen tracking and alerts clinicians and patients about available research opportunities.
Incentivize clinicians and health care systems to partner with researchers to identify potential clinical research candidates using tools such as phenotyping algorithms.