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
Jan 02, 2016
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
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?