E-HEALTH RESEARCH AND POLICY ANALYSIS
FOR DISABILITIES AND VULNERABLE POPULATIONS
Redwood Health Information Collaborative
September 17, 2008
Thomas A. Horan, Ph.D., Director
Kay Center for E-Health Research
Claremont Graduate University
Kay Center Mission
The mission of the Kay Center for E-Health Research is
to advance scientific understanding and public policy
improvements relative to how new electronic health
systems can best incorporate health, chronic disease,
and disability needs so as to enable industry
efficiency and promote societal welfare.
Kay Center Activities
Innovative systems for disability determination and health
Personal health records for underserved populations
Three national forums investigating linkages between personal health
records and systems for those with disabilities
Representation on the AHIC (Consumer Empowerment WG) – Co-
chairing subgroup on disabilities
Education and Training
Four national symposia focusing on users and consumers of personal
health information management systems
Case studies on diverse range of personal health systems
Equally distributed among well, disabled, unwell
Age range 25-93
Workers, students, retirees, non-working
½ male, ½ female
well, unwell, disabled
Age range 18-80
½ male, ½ female
The group with disabilities was more expressive of positive
preference and choices than the non-disabled.
The group with disabilities expressed more general acceptance
toward PHR technology than the group without disabilities.
The group without disabilities had a low level of preference
expression, positive or negative.
During the interviews, many in this group responded only
vaguely to the question.
Even technology professionals expressed a low level of
Exploring a Taxonomy
Information Sharing in Emergency
PHRs in Vulnerable
2007 received BlueShield Foundation grant to conduct case
studies of PHR use within underserved populations.
Case studies include MiVIA, COPE Health Solutions, and
interviews with community health leaders.
2008 MiVIA case study conducted including staff and patient
MiVIA Case Study Overview
Un-tethered web-based PHR targeted for use with migrant
farm worker and associated populations
Due to citizenship issues and socioeconomic factors
migrants often have a very fragmented healthcare and
health record history
Program currently implemented in the Sonoma, Napa, and
San Joaquin County
Stores medical and dental information
Photo ID Emergency Card for individuals
Family and individual memberships
Includes email account for patients offering a “permanent” address
Includes clinician portal for professional entry and verification
Identifying Care Manager and
Semi-structured interviews were conducted in November 2007 with
the director, doctor, nurse and MiVIA outreach worker of the St.
Joseph Health System and an administrator and two case-workers
of the Vineyard Workers Services of Sonoma County.
Examine general impressions and experiences of healthcare
workers as they work to assist the migrant population.
Understanding of the minute and at times formless interactions
between migrant patients, their care managers and the associated
community health and social service organizations.
Primary Issues Identified
PHR for Underserved
Evaluation Framework Consisting of Four Levels:
User -- access, usability and acceptance
Technology -- availability, reliability, affordability
Organizational -- capacity, training, collaboration
Policy -- drivers and barriers
Design and Testing of HealthATM application that addresses
(some of the above) issues.
Disability Research Agenda -
Disability Policy Forums
Three Washington DC Forums on Disability Applications
Development and Approval of AHIC Policies
Use of PHR by consumers with disabilities can:
promote continuous personal care management,
enable integration of medical assessment and treatment records,
allow active user involvement,
enable efficient assembly of relevant medical records,
shorten the disability determination process,
provide better coordinated care throughout the duration of the
PHR includes provider fed
read-only copies of the medical records from EHR
health plan decision EHR
PHR member request and bids
The AXIS staff reviews
view formal request
The Member this request, and
in PHR and enter
submits a creates the formal
their bid into PHR
DME request for the health
request plan in AXIS
through his Member Data System
PHR to AXIS (modified EMR)
Health Plan views
AXIS Member DME Providers formal request from
formal request AXIS, member
AXIS Staff Health request and bids in
health plan decision Plan linked PHR
More than 5 million new applications for disability benefits are filed each
Obtaining medical information to support these claims is perhaps the most
difficult part of the process.
SSA requests 15-20 million medical records each year on behalf of patients
applying for benefits.
PHR will be useful if we can:
Identify the data elements that are necessary in a PHR to mark baseline information of our
Develop standard means for linking the data elements to the disability determination criteria
Develop standard methods for sharing the medical information and getting the relevant pieces
from the medical record for disability determination.
SSA Medical Disability
Modified Business Process
Payer PHR includes
PHR includes populated by the pharmacies Pharmacy
populated PHR includes provider fed
by the payers read-only copies of the medical records from EHR EHR
PHR Provider an EHR
Medical Records are
retrieved through the PHR
information populated Medical portion of the claim is retrieved from the PHR Provider
by the claimant and transferred to a State DDS for development
and medical review Request is sent to Provider
Claimant files for for Medical Records
Social Security Disability
Claimant either gives SSA
access to pull information
from his/her PHR or State Disability
Claimant Provider returns copy of
exports his/her information SSA Field Office Determination Service
from PHR to SSA Field Office reviews DDS reviews medical medical records to DDS
SSA claims portal claim and makes records and makes
benefit determination a medical decision
Policy Research Objectives
To assess the impact of incomplete, inadequate, or delayed
medical evidence and/or the delay in completing medical
evidence on the disability determination process (specifically,
for SSA disability claim processing)
To explore the solutions implemented to address incomplete,
inadequate, or delayed medical evidence collection
To examine the role online access to electronic records can
play in lowering the number of incomplete or inadequate
medical evidence incidences or in reducing the delay in
completing medical evidence
Our Focus – Medical
19 Interviews with key informants
9 from SSA
3 from VA
2 from GAO
4 claimant representatives
1 industry expert
30 minutes for each interview
7 questions that address 3 objectives
Incomplete or delayed medical evidence is a serious issue and
has substantial impact on the disability determination process.
Various solutions were implemented by SSA, however, they
were not fully successful in eliminating the incomplete or
delayed medical evidence issues.
Recent developments in HIT, specifically effective utilization of
EHRs, can play a significant role in addressing medical
AHIC Consumer Empowerment
Subgroup on Disability
AHIC Working Group Disability Issues (Unique/Distinctive)
Access consistent with 508/504 Requirements (U)
Coordinated care/emergency needs (D)
Authentication Challenges (U)
Coping with Multiple PHRs (D)
Lifelong portability needs of disability (D)
Cultural Differences (D)
HIPAA Authorization Challenges (D)
Medical Evidence for Disability Determination (U)
HHS should coordinate activity to ensure that PHRs sponsored
by the federal government are consistent with statutes and
regulations, including accessibility standards in accordance with
Section 503 (29 U.S.C. § 793), 504 (29 U.S.C. §794) and 508
(29 U.S.C. §794d) of the Rehabilitation Act of 1973 (Pub. L. 93-
As HHS develops a use case with attendant interoperability
standards specific to the needs of persons with disabilities, this
use case should include the following:
• Provision for coordinated care across multiple health care encounters,
providers, and caregivers.
• The ability of authorized care and service providers, including the Social
Security Administration (SSA) and other public and private entities that have
purview over disability compensation, to utilize electronic authentication and
electronic transmittal to obtain relevant information from the PHR on behalf
of the authorizing consumer…
• Functional assessment for use by persons with disabilities in subsequent
disability record development
As PHRs are certified, HHS should coordinate efforts to ensure
that relevant electronic health information in these PHRs is
interoperable with that in CCHIT certified Electronic Health
Exploring a Taxonomy
Any PHR offered directly or sponsored by HHS should be
developed to accommodate technological applications that can
be used by persons with disabilities, and can address
accessibility issues that include differences in language, the
broad range of racial and cultural diversity, and differences in
family and community practices.
Kay Center Next Steps
Systems Analysis: Conducting Three Part Analysis of Disability Determination
Process, including claimant, examiner and health care provider perspectives.
Concept Development: Outlining Potential Solutions in Heath Management
and Disability Determination Space.
Prototype Examination and Development: Health ATM Prototype and
Disability Management PHR Module Consideration.
Kay Center Forum: Disability Innovations Innovations Forum, February, 2009
Global Considerations: Preliminary Examination of Disability Systems in
India, on behalf of World Bank.
There is a need for better electronic and personal health
management systems for disability and diverse communities.
There are innovative approaches to improving disability
determination and health management in both disability and
vulnerable populations that can and should be fostered.
Federal and local policy support is necessary to achieve these
Lafky, D. and Horan, T. "Prospective Personal Health Record Use Among Different User
Groups: Results of a Multi-wave Study", 41st Hawaii International Conference on System
Sciences, January 2008 (accepted).
Tulu, B., Burkhard, R., and Horan, T., Information Systems and Health Care XIV: Continuing
Use of Medical Information Systems by Medical Professionals: Empirical Evaluation of a
Work System Model, Communications of the AIS, Vol. 18, 2007, 641-656.
Lafky, D., Tulu, B., and Horan, T., Information Systems and Health care: A User-Driven
Approach to Personal Health Records, Communications of the AIS, Vol. 17, 2006, 1028-
Tulu, B., Hilton, B. N., Horan, T. A., Improving Disability Evaluation Productivity: Linking
Innovative Business Models with Information Technology, International Journal of
Healthcare Technology and Management, Vol. 7, Nos. 1/2, 2006, 168-182.
Tulu, B., and Horan, T., Understanding the Dynamics and Use Cases of Electronic Disability
Records, Journal of the American Medical Informatics Association (under review), 2007.
Lafky, D., and Horan, T., Toward an Empirical Taxonomy of Personal Health Records
Systems, Proceedings of Twelfth Americas Conference on Information Systems (AMCIS),
Acapulco, Mexico, 2006.
For More Information
Kay Center for E-Health Research
Thomas A. Horan, Ph.D. Sue S. Feldman, RN, M.Ed.
Director Assistant Director