Electronic health records: Ownership, access, and controlJerusalem Walker, BA, RN, BSN

Crisis in US health care

• Spiraling costs• Aging of population• Fragmented care

delivery• Uneven quality• Inequitable yet

expanding access• Provider shortages

Health Information Technology

Cost reduction

• Information sharing between providers

• Billing, scheduling, reimbursement

• Service duplication• Quality measurement

Improved care quality

• Simultaneous chart access• Service coordination• Patient education• Clinical decision support• Decreased med errors• Disease surveillance• Research

Enter our superhero, the EHR…

Concerns:• Data security• Costs of adoption• Utility• Interoperability• Data access• Access control• Ownership

Patient-centered Care

• Patient is center of health care team

• Increases patient involvement in their own care• This requires a paradigm shift

Patient access to the EHR

Fundamental questions remain to be answered:• Who has access to the record?• Who controls this access?• Who owns the information?

Access to the EHR

• Access can mean input or retrieval of data• Patient access to paper charts has been

limited• Electronic access does not pose the same

logistical problems• But patient access to the EHR has met with

varying amounts of resistance from the medical establishment

Arguments in favor• Transparency in health care• Engaging patients in their own care• Patient education• Improving patient-provider communication• Increased compliance

Arguments against• Increased time and effort– Explaining what was written– Reassuring about abnormal labs

• Having to “dumb down” the language

• Frightening the patients• Fears of litigation

Examining the evidence

• Increases patient engagement• Enhances patient understanding• Can increase accuracy of the patient chart– Medication lists– Certain risk assessments

• Improves quality of care

Who owns the EHR?

• Current regulations do not provide the answer• HIPAA allows patients to block access in some

situations• This is not the same as ownership: patient

cannot:– Destroy it– Take it from anyone– Sell it

The Tragedy of the Commons

Shared resources are over-used and depleted by individuals acting in their own self-interest

The Tragedy of the Anticommons

• Driven by financial, not social interests• Allows blocking of access so that it is useful

to very few• Information is different

from a physical resource• Value is not diminished

when it is used

Interoperability

• So many different systems are now in use

• Makes sharing of information difficult between and even within organizations

• Instead of networks, we have “information silos” not unlike old paper systems

Old silo

New silos

Implications for DNP practice

We have the skills to shape the “new information paradigm” by supporting:• Expanded patient EHR access• Patient input into EHR access design• Inclusion of underserved, disadvantaged,

minority groups• Advocating for policies which support

meaningful access to health data

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