1. Raja Kushalnagar, J.D., LL.M., Ph.D. National Technical Institute for the Deaf at Rochester Institute of Technology

2.  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

5.  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

6.  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

7.  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.

8. 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

9.  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, …)

10.  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

11.  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.

12.  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).

13.  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?

14. Raja Kushalnagar, J.D., LL.M., Ph.D. raja.kushalnagar@rit.edu