Redwood Health Information Collaborative September 17, 2008 Thomas A. Horan, Ph.D., Director Kay Center for E-Health Res

1. E-HEALTH RESEARCH AND POLICY ANALYSIS FOR DISABILITIES AND VULNERABLE POPULATIONS Redwood Health Information Collaborative September 17, 2008 Thomas A. Horan, Ph.D., DirectorKay Center for E-Health Research Claremont Graduate University

2. 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. http://kaycenter.cgu.edu Kay Center Mission

3. Kay Center Activities Research • Innovative systems for disability determination and health management • Personal health records for underserved populations Policy • 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

4. 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

5. 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. Interview Results

6. Exploring a Taxonomy

7. Information Sharing in Emergency

8. PHRs in Vulnerable Populations • 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 interviews

9. MiVIA Case Study Overview MiVIA PHR • 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

10. 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

11. 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.

12. Primary Issues Identified

13. 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.

14. Disability Research Agenda - Policy • Use Cases • Health Management • Disability Determination • Disability Policy Forums • Three Washington DC Forums on Disability Applications • AHIC Involvement • Development and Approval of AHIC Policies

15. 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.

16. AXIS Member AXIS Staff DME Providers Disability Health Management Case PHR includes provider fed read-only copies of the medical records from EHR EHR PHR health plan decision member request and bids Provider has an EHR DME Providers view formal request in PHR and enter their bid into PHR The AXIS staff reviews this request, and creates the formal request for the health plan in AXIS Member Data System (modified EMR) The Member submits a DME request through his PHR to AXIS and monitors progress Provider Health Plan views formal request from AXIS, member request and bids in linked PHR formal request Health Plan health plan decision

17. Use Case: Disability Determination • More than 5 million new applications for disability benefits are filed each year. • 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.

18. SSA Medical Disability Modified Business Process Payer PHR includes medication information populated by the pharmacies Pharmacy PHR includes claim information populated by the payers EHR PHR includes provider fed read-only copies of the medical records from EHR PHR Provider has an EHR Provider Medical Records are retrieved through the PHR PHR includes information populated by the claimant Medical portion of the claim is retrieved from the PHR and transferred to a State DDS for development and medical review Provider Request is sent to Provider for Medical Records Claimant files for Social Security Disability Claimant either gives SSA access to pull information from his/her PHR or exports his/her information from PHR to SSA claims portal State Disability Determination Service Claimant Provider returns copy of medical records to DDS SSA Field Office SSA Field Office reviews claim and makes benefit determination DDS reviews medical records and makes a medical decision

19. Policy Research Objectives • To assess the impact of incomplete, inadequate, or delayedmedical 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

20. Our Focus – Medical Evidence Clinical Information Claims Information Medical Evidence

21. Methodology • 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

22. Findings • 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.

23. 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)

24. Approved AHIC Recommendatons 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. 93-112). Approved 04/22/08

25. Approved AHIC Recommendation 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

26. Approved AHIC Recommendations 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 Records. Approved 04/22/08

27. 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

28. 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.

29. Conclusions • 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.

30. 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, 1028-1041. • 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.

31. Thank you!

32. For More Information Kay Center for E-Health Research http://kaycenter.cgu.edu 909.607.9395