ACCESSIBLE HEALTH INFO

A LEGAL PERSPECTIVE

Raja Kushalnagar, J.D., LL.M., Ph.D.

National Technical Institute for the Deaf at

Rochester Institute of Technology

HEALTH INFORMATION

Health Information Usually fragmented across multiple sites Relationship and ownership standards compliance

Ownership tension between patients, doctors, hospitals, insurance companies, etc.

Records patient’s medical information Update and enforce access and privacy standards

Resolve tension between medical device manufacturer “lock-in” and network efficiencies of open standards

EHR INPUTS

EHR OUTPUTS

ELECTRONIC HEALTH RECORDS Serve multiple owners and customers

Patients Doctors Researchers Insurers

Law is evolving towards shared custody Shifts away from property to contract law Therefore “accessibility” definition will evolve

EHR to PHR

EHR: RELEVANT LAWS

EHR Ownership Property, contract and tort laws

EHR accessibility for non-English speakers Civil Rights Act of 1964

EHR accessibility for people with disabilities Section 508 ADA State ADA and related laws

PROPERTY/CONTRACT LAWS

Property law – no uniform state law Regulates ownership rights Medical providers used to own EHR Consumers: Need and Demand for shared EHR ownership

Contract law – uniform state law via UCC Regulates sales If “defective”, can prohibit or refuse sales Need to be more assertive in promoting accessibility

Problem: Amazon Kindle 1.0 did not allow read-aloud function

Solution: Universities refused to order eBooks until Kindle was fixed to allow read-aloud.

TORT LAW

• Tort law – not uniform state law Injury compensation for defective product Applies to “average” user of product

EHR w/ disabled consumers “average” disabled consumer standards applies

Malpractice

AMERICANS WITH DISABILITIES ACT(ADA) Federal law

Covered entities may not discriminate by disability Must provide equal access to everyone reasonably

Covers Workplace access (pharmacists, hospital staff, …) Commercial facilities (hospitals, pharmacies, …)

CIVIL RIGHTS ACT OF 1964

Applies to public accommodations Hospitals, pharmacies, etc.

Mandates equal linguistic access for people who do not speak English

Requires provision of native language materials Interpreters or equivalent translations Printed materials in native language

EXAMPLE 1

Situation: Pharmacy uses old electronic records software that can only print prescription instructions in a standard font

Problem Inaccessible to customers with low vision Inaccessible to customers with

Solution: Staff needs to read information aloud to customer. Not ideal. Print prescription in large font. Provide data in XML or HTML to consumer’s preferred device.

EXAMPLE 2

Situation: Pharmacy offers “automated ordering system” that ships medicine based on EHR record of prescription. It reads aloud menu and instructions in English only.

Patient cannot understand instructions. (situational disability) Who?

Deaf and Hard of Hearing Speakers who do not understand English

What remedies? ADA and Civil Rights Act of 1964

Solution Provide translation (or translator/interpreter) Menu in multiple languages. Automated translation (in future).

EXAMPLE 3

An out of town deaf patient's poor English caused him to misunderstand questions in ER

 On the basis of the recorded answers alone, the staff nurses involuntary hospitalized this person overnight!

When a psychiatrist arrived the next morning and evaluated the patient, he was promptly released!

How can laws and AEHR help? Access to patient records through EHR or PHR Option to video relay interpreting service?

QUESTIONS?

Raja Kushalnagar, J.D., LL.M., Ph.D.

raja.kushalnagar@rit.edu