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      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
              User Taxonomy
              Research Study
Qualitative interviews
   28 respondents
        Equally distributed among well, disabled, unwell
        Age range 25-93
        Workers, students, retirees, non-working
        ½ male, ½ female
Quantitative Survey
   210 respondents
        well, unwell, disabled
        Age range 18-80
        ½ male, ½ female
              Interview Results

 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
     technology preference.
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
              MiVIA Information
               Systems Model

   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
 Administrative Perceptions
 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 -
 Use Cases
    Health Management
    Disability Determination

 Disability Policy Forums
    Three Washington DC Forums on Disability Applications

 AHIC Involvement
    Development and Approval of AHIC Policies
                  Use Case:
             Health Management

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
                        Disability Health
                       Management Case
                                                        PHR includes provider fed
                                             read-only copies of the medical records from EHR
                                               health plan decision                                      EHR
     PHR                                       member request and bids
                                                                                                           Provider has
                                                                                                             an EHR
                                                        DME Providers
                    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)
     and monitors

                                                                                    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
                   Use Case:
            Disability Determination
   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
        health state
     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
                              medication information
  PHR includes              populated by the pharmacies               Pharmacy
claim information
    populated                                                    PHR includes provider fed
  by the payers                                       read-only copies of the medical records from EHR         EHR

                                                                                                                    Provider has
       PHR                                                             Provider                                       an EHR
                                                                 Medical Records are
                                                              retrieved through the PHR

         PHR includes
    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

     Clinical          Claims
   Information      Information


 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
    evidence issues.
        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)
              Approved AHIC
Recommendation 1.1

  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-

  Approved 04/22/08
                   Approved AHIC
Recommendation 1.2

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

    Approved 04/22/08
              Approved AHIC
Recommendation 1.3

 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

Approved 04/22/08
         Exploring a Taxonomy

Recommendation 1.4

 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.

Approved 04/22/08
           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
    Washington, DC.

   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
    desired systems.
             Sample Publications
   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.
Thank you!
    For More Information

Kay Center for E-Health Research

Thomas A. Horan, Ph.D.   Sue S. Feldman, RN, M.Ed.
       Director              Assistant Director

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