Electronic Health Records, Electronic Special Education Records: What are the issues? (Usability, utility, user-centered design, data security, interoperability, Section 508 accessibility...)

I suppose this topic intrigues me more than most school psychologists because of my IT training.  In recent years,  I've taken a few graduate-level HCI related courses, including a course about looking at privacy and security in IT from a human-computer interaction perspective.  As a user of information systems, I understand that this is a complex issue.


I know that there are important emerging issues in the EHR field that most likely will impact student information systems and electronic special education records, but I'm not sure how this will play out.  Who will be responsible for the expenses that public school districts will incur in the future if EHR regulations and requirements are mandated for student records that include health information?   Who will be responsible for ensuring that the information systems used by public school employees follow usability, accessibility, and privacy/security standards?     


Although school districts are not typically considered to be health organizations,  they employ nurses, occupational, physical, and speech/language therapists, and psychologists.  These professionals serve students who have special needs, and some of their services are reimbursed through Medicaid.    


Like IT systems used in the health care industry,  many IT systems that handle student information were initially developed during the late 1990's, if not before, and over the years have been upgraded and tweaked to handle requirements that simply did not exist even five years ago. Data regarding students is stored in many places, for different purposes, and accessed by different people.  Some student information systems don't play well with one-another.   As more data and information is required to be stored and accessed on-line, the chances for errors and security breaches increase.


 My hunch is that "best practices" in EHR will inform future best practices in electronic student information systems, including systems designed to handle information regarding students with special needs.  This is a topic I'd like to explore further!

Below is a list of of links to a  few articles and presentations I think are important to review if you are interested in this topic:

Electronic Records Usability  (Includes recent publications on this topic, including a few articles about usability and electronic health records that can be accessed through mobile phones and related devices.)  HiMSS 
"Usability is defined as the effectiveness, efficiency and satisfaction with which specific users can achieve a specific set of tasks in a particular environment. (ISO Bulletin. 2003;34:6)."
Can best practices help develop meaningful users? (6/21/2010, Chris Brancato) pdf
Understanding the Landscape of EMR Usability (4/13/2010, Jeff Belden) pdf
Applying Usability and User-Centered Design Methodologies to Achieve Meaningful Use
Lisa Battle, Jasmin Phua & Duane Degler, Design for Context, HiMSS  Virtual Conference 6/2010)
Accessibility of Health IT  (pdf)  Addresses Section 508 applies to E & IT that is developed, used, and maintained. (Government Health IT Innovation 2010 Conference)
Health Information Technology and People with Disabilities (American Association of People with Disabilities)
Health Information Technology and HIPAA  PDF
Access Board "A Federal Agency Committed to Accessible Design" 

• Section 508 Homepage:  Electronic and Information Technology
• Developing Accessible Software Tutorial 

Education Records
National Center for Educational Statistics, National Forum on Education Statistics:
The Forum Guide to Data Ethics
The Forum Guild to Data Ethics Online Course
Crisis Data Management: A Forum Guide to Collecting and Managing Data about Displaced Students
Family Educational Rights and Privacy Act (FERPA)
Section 508 Homepage:  Electronic and Information Technology




RELATED:  For your convenience, I've copied and pasted the following related links from the National Forum on Education Statistics website:

Appendix A: Related Resources

These materials may be useful to school, district, or state education agency staff considering data ethics.

Forum Guide to Metadata: The Meaning Behind Education Data This document was developed to empower staff to use data more effectively as information. It explains what metadata are, why they are critical to the development of sound education data systems, what components comprise a metadata system, what value metadata bring to data management and use, and how to implement and use a metadata system in an education organization.

Every School Day Counts: The Forum Guide to Collecting and Using Attendance Data This Forum guide offers best practice suggestions on collecting and using student attendance data to improve performance. It includes a standard set of codes to make attendance data comparable across districts and states. The publication also presents real-life examples of how attendance information has been used by school districts.

Managing an Identity Crisis: Forum Guide to Implementing New Federal Race and Ethnicity Categories This best-practice guide was developed to assist state and local education agencies in their implementation of the new federal race and ethnicity categories, thereby reducing redundant efforts within and across states, improving data comparability, and minimizing reporting burdens. It serves as a toolkit from which users may select and adopt strategies to help them quickly begin the process of implementation in their agencies.

Forum Guide to the Privacy of Student Information: A Resource for Schools This free publication was written to help school and local education agency staff members better understand and apply the Family Educational Rights and Privacy Act (FERPA), a federal law that protects privacy interests of parents and students in student education records. It defines terms such as "education records" and "directory information"; and offers guidance for developing appropriate privacy policies and information disclosure procedures related to military recruiting, parental rights and annual notification, videotaping, online information, media releases, surveillance cameras, and confidentiality concerns related specifically to health-related information. Much of the guidance relating to privacy policies would be of interest to organizations generating business rules about the topic.

Forum Guide to Protecting the Privacy of Student Information: State and Local Education Agencies This free guide presents a general overview of privacy laws and professional practices that apply to information collected for, and maintained in, student records. The publication also provides an overview of key principles and concepts governing student privacy; summarizes federal privacy laws including recent changes; identifies issues concerning the release of information to both parents and external organizations; and suggests good data management practices for schools, districts, and state education agencies. Much of the guidance relating to privacy policies would be of interest to organizations generating business rules about the topic.

Forum Curriculum for Improving Education Data: A Resource for Local Education Agencies This curriculum supports efforts to improve the quality of education data by serving as training materials for K–12 school and district staff. It provides lesson plans, instructional handouts, and related resources, and presents concepts necessary to help schools develop a culture for improving data quality.

Forum Guide to Education Indicators This publication provides encyclopedia-type entries for 44 commonly used education indicators. Each entry contains a definition, recommended uses, usage caveats and cautions, related policy questions, data element components, a formula, commonly reported subgroups, and display suggestions. This publication will help readers better understand how to appropriately develop, apply, and interpret commonly used education indicators.

NCES Nonfiscal Data Handbook for Early Childhood, Elementary, and Secondary Education (2007) The NCES Handbooks are a valuable source of metadata for organizations and individuals interested in education data. These print and online resources define standard education terms for students, staff, schools, local education agencies, intermediate education agencies, and state education agencies. The Handbooks are intended to serve as a reference for public and private organizations, including education institutions and early childhood centers, as well as education researchers and other users of education data. In order to improve access to this valuable resource, NCES has also developed the NCES Handbooks Online, a webbased tool that allows users to view and download Handbook information via an electronic table of contents, a drill down finder, element name and first letter searches, and advanced query options.

Chid-Computer Interaction: A Featured Community at the Upcoming CHI 2011 Conference

During CHI 2010, I signed up for the  "Designing for the iChild" course.  In one afternoon, I learned more than I had expected, especially the technique called "Layered Elaboration", a collaborative design strategy that involves inter-generational teams of children and adults.  One of the leaders of this course was Allison Druin, Associate Professor and director of theHuman-Computer Interaction Lab at the University of Maryland.  Dr. Druin's focus is in the area of child-computer interaction and how children can be meaningfully involved as partners in the design process.  

The quote below, found on the HCIL Children as Design Partners website, explains why this is so important:

"We have a chance to change technology, but more importantly we have a chance to change the life of a child. Every time a new technology enables a child to do something they never dreamed of, there are new possibilities for the future."  -Allison Druin

In my work as a school psychologist, I use technology with students quite often, especially when I'm at Wolfe, a program for students who have more complex disabilities, including severe autism.  I have been fortunate to have a new SMARTBoard at my fingertips, and access to the school's SMARTtable.  I learn from my students every day.

I believe that we are only at the "tip of the iceberg" with this sort of technology- and related applications such as the iPad and similar devices.   In my experience, well designed technologies and applications can open up a meaningful window to the world for children, teens, and others with disabilities.

Most of the information below was taking from the CHI 2011 conference website:

About the Child-Computer Interaction (CCI) community:

"At CHI, the CCI community will want to attract papers and contributions that represent real advances in the understanding of, or development and refinement of methods for, child computer interaction. It will also seek to unearth groundbreaking innovations addressing the needs, capabilities and preferences of children that have the potential to become reference works for developments in this field."

"By its very nature, The CCI community will have to be divergent in its thinking at CHI; it must also be about two of the mainstream CHI communities – engineering and design, but will potentially also be concerned with many of the communities of technologies (Smart devices, surfaces, mobile), of experiences (Play, Learning, Communication) and of methods (participatory design, evaluation)." ....

"Child Computer Interaction is a new community for CHI. It is a place for contributions where a method or a design is proposed that is especially suited to children and that could not sensibly be easily adapted for adults.  

We are keen to have contributions to all the usual CHI tracks but are also offering four special tracks for our own extra special community. These are:

• Child Partnership Projects (CPP): A design competition for teams that include children.

• Participatory Papers: Scholarly publications that are disseminated for children readers. (i.e. written in a different way)

• Lessons from the Trenches: Targeting industrial cases and experiences. A lively venue where experiences can be exchanged, and researchers can be exposed to the realities of industrial practice in this domain.

• Theatre pieces: High quality video contributions, available in a library after the conference, of methods that can be re used and learned from."

Child-Computer Interaction Chairs:
Janet C. Read
University of Central Lancashire
Panos Markopoulos
Eindhoven University of Techology
Allison Druin
University of Maryland
childcomputerinteraction@chi2010

RELATED
Walsh, G., Druin, A., Guha, ML, Foss, B., Golub, E., Hatley, L (2009)  [PDF] Layered Elaboration: A New Technique for Co-Design with Children.  ACM CHI 2009 

Last year, I attended CHI 2010 and participated in a workshop about the next generation of HCI and education.  It was a wonderful opportunity to share ideas with people from all over the world who are interested in emerging technologies, kids, and education.  I plan to attend CHI 2011 in Vancouver, Canada next May 7-11, and even though the conference is months away, I can barely wait.  The good news it that the Child-Computer Interaction community will have an important presence at the 2011 ACM CHI conference.  I wanted to share a little bit about this development on this blog. 

Note: This was also posted on the Interactie Multimedia Technology blog.

Role of Psychology in Assistive Technology and Device Discontinuance: Article from the American Psychological Association

Susanne Croasdaile, from the VCU Assistive Technology Blog, posted a link to an article from APA about the role of psychology in AT. According to the article, the input of psychology can lead to a better "goodness of fit" between the person and the technology, and decrease the phenomenon of device discontinuance.

It should be noted that the traditional terminology used for device discontinuance is device abandonment. Unfortunately, this asigns blame for the discontinuance on the user of the technology or device, rather than mis-match between the device/technology and the user.

(For more information about the factors related to device discontinuance, see "ATOMS Project Technical Report - Factors in Assistive Technology Device Abandonment: Replacing “Abandonment” with “Discontinuance” by April Lauer, MS, OTR, Kathy Longenecker Rust, MS, OT, & Roger O. Smith, PhD, OT.)

From the APA article:

"Development of successful AT products requires a careful analysis of the goals, functional capacities, and physical and social environments of the intended users. Marcia Scherer, of the University of Rochester Medical School, notes that psychologists play a leading role in carrying out this work, by conducting studies of users’ judgments of whether and how particular technologies benefit them; how technologies fit within the users’ full range of activities and contribute to their sense of control; the perceptions and attitudes of users and others toward particular technologies; and the ways in which technologies actually increase users’ abilities to perform particular activities independently in daily life."

"Careful research on these questions as part of the technology development process can help ensure that the products are actually acquired and used. As Scherer points out, “We know that technology-person mismatches can have a series of repercussions including wasted resources, and people not performing at their functional best. On the service delivery level, device abandonment represents ineffective use of an assistive technology, all of which can be addressed through psychological science.”

AT&T and Universal Design

"AT&T Unveils Universal Design Approach to Help Developers Meet the Wireless Needs of Customers with Disabilities"

This is good news!

From the AT&T website:

"It is our goal that the concept of 'design for all' is not viewed as a constraint but as a catalyst for innovation across the industry," said Carlton Hill, vice president of Marketing for AT&T's mobile unit. "We believe that, by making our methodology on Universal Design available for all to see, we can show the importance and value of creating wireless products and services that are usable and beneficial to as many people as possible. The end result will be more choices for more consumers."

"Integration of Universal Design into business practice is fundamental to our mission of equitable access to wireless technologies for people of all ages and abilities," said Jim Mueller, project director, User-Centered Research, Rehabilitation Engineering Research Center for Wireless Technologies at Georgia Tech. "We're glad that AT&T shares our commitment and is making its Universal Design methodology publicly available."

Examples of accessible products/services:

* Mobile Speak is a powerful, full-fledged screen-reader with an easy-to-learn command structure, intuitive speech feedback in several languages and Braille support, which can be used with or without speech. Unlike other screen-readers for mobile phones, Mobile Speak automatically detects information that the blind user should know, just as a user with sight would easily find highlighted items or key areas of the screen at a glance.
* Mobile Magnifier is a flexible, full-screen magnification application that supports low- and high-resolution screens and can be used with or without speech feedback. Magnification software is compatible with a wide variety of mobile devices.


AT&T's Universal Design Policy
AT&T's Universal Design Principles (pdf)is a good resource about Universal Design and mobile/hand held technology, complete with pictures, example scenarios, and links to additional information.

Google Lab's Search for the Visually Impaired

Just a brief post:

Google Labs' search feature for people with visual impairments is a good idea. It has been around since 2006. The search results are displayed to ensure that the top results are websites that work with screen readers and keyboard navigation.

Overview of Accessible Solutions from Google

Google Lab's Accessible Search FAQ

Google Lab's Accessible Users Group

Technology and Alternative Cognitive Assessment?

I've been struggling to provide alternative assessments to use when I work with students who have previously tested within the severe to profound range of cognitive ability. Often these young people have more than one disability and it is very difficult to identify "hidden" cognitive strengths or areas of emerging skills.

Although some of students do not have the skills necessary to point to items on a test stimulus card, or understand the directions required by traditional cognitive test batteries, some of them they CAN point and "click" on a screen, using a mouse or an AT device.

I know of several students who test within the severe range of cognitive ability who who can navigate websites to find entertainment, music, learning activities, and special interests, often without assistance. These skills are important, but they are not included in standarized cognitive or adaptive behavior assessments.

Some people are working hard to figure out a "better way".

Organization SoftTouch, Inc. provided a workshop for educators of students who have severe disabilities addressing this concern. The workshop,
"Show Me What You Know — Alternate Assessment for Students with Autism, Cognitive and Physical Disabilities", was presented at a the Conference 2006: Technology & Persons with Disabilities.

The people at CAST- Center for Applied Special Technology, known for getting the word out about Universal Design for Learning (UDL), are also concerned about the need for accessible assessments.

I'm interested in alternative assessments and how cognitive evaluation procedures can embody the principles of universal design and access. School psychologists need more tech in our toolboxes if we are to provide meaningful assessments. This technology needs to embody the principals of "universal usability", a topic that I'll address more in-depth in a future blog.

We also need to look at current research in related fields, such as cogntive science. Here is an example:

According to the article in the Charlotte Observer (April 12, 2007), IBM volunteered to work with researchers from the Center for Behavioral Neuroscience to develop computer games designed to test the reasoning , learning, and memory skills of primates. The computer games are installed on touch-screen monitors embeeded in primate habitats in several zoos, including Zoo Atlanta.

I haven't done much reading in this area, but from what I can see, the research with primates has the potential to help develop better methods of assessing cognitive functioning of people who have strengths and abilities that can not be assessed through traditional psychological and cognitive tests.

Interesting Resources:

"The Alliance for Technology Access (ATA) is the national network of community-based Resource Centers, Developers, Vendors, and Associates dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies."

Julie Martin-Malivel's website Dr. Martin-Malivel conducts comparative cognition research in human and non-human primates.

"Chimpanzee Facial Expressions are Helping Researchers Understand Human Emotional Communication" This is being conducted by the Yerkes National Primate Research Center Cognitive Testing Facility. Food for thought.

"Universal Usability"
Universal Usability principles ensure that web sites and web-based applications are accessible. I think that these principles should be considered when planning cognitive and related assessments for people who have low incidence and/or multiple disabilities. (Leave a comment- I want to know what people think about this!)

Novint Falcon 3-D Haptic Game Controller - This device looks like it will have great potential for young people with visual and mobility impairments.