Personal Health Records and Public Policy for Children with Disabilities Elaine A. Blechman University of Colorado-Boulder Third Annual Kay-CGU Symposium Pacific Edge E-Health E Innovations Claremont Graduate University 12-1-06 Elaine Blechman 2006 1 Talking Points 1. Problem: Children with special health care needs (CSHCN) require higher quality services at lower expense to families. State governments strive to reduce public costs for long-term health care. 2. Solution: Consumer-controlled, interoperable PHRs (CE/PHR) can satisfy the seemingly contradictory needs of CSHCN and state government. : A low-income mother employs a CE/PHR, with state agency help, to apply for benefits and to coordinate and monitor a child s care. A regional crossagency alliance uses CE/PHR enterprise accounts to avoid mistakes and reduce duplicative, wasteful effort. Elaine Blechman 2006 2 1
Arnold and Sharen Dorsett with their children, Dakota, Zachery and Jessica, back. Though they had insurance, health-care costs for Zachery led the Dorsetts to file for bankruptcy this year. Elaine Blechman 2006 3 Elaine Blechman 2006 4 2
Adequacy of American Medical Care Elaine Blechman 2006 5 Children with Special Health Care Needs... are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and also require health and related services of a type or amount beyond that required by children generally. Elaine Blechman 2006 6 3
SHCN children need multiple services: prescription meds (88%), dentists (78%), preventive care (74%), med specialists (e.g., cardiologists) (52%), vision care (36%), mental health care (25%); med supplies (25%); physical, occupational, or speech therapy (24%). Elaine Blechman 2006 7 SHCN kids, regardless of family income, miss services they need such as dental care (8%), mental health care (5%), specialist care (4%), PT/OT/speech therapies (3%). Elaine Blechman 2006 8 4
Care coordination is a problem for lowest-income (14%) and highest-income (10%) CSHCN families. Elaine Blechman 2006 9 Over 19% of CSHCN families, of all income levels, report that health care providers do not give them enough information. Elaine Blechman 2006 10 5
About 14% of CSHCN parents spend 11+ hrs/wk on tasks that include facilitating information exchange among a child s many providers. Elaine Blechman 2006 11 Insurance does not cover CSHCN service needs in highestincome (28%) and lowest-income (43%) families. Elaine Blechman 2006 12 6
Among CSHCN parents, 17% have cut back on work and 13% have stopped working to care for their children. Elaine Blechman 2006 13 CSHCN in 3 States & the Nation % CSHCN Prevalence 11+ School Absences California 10.3 16.2 Colorado 11.5 10.2 Rhode Island 14.1 13.7 U.S. 12.8 15.8 No personal doc/nurse 13.2 11.7 6.0 11.0 Affected parent employment 31.4 30.5 26.8 29.9 Elaine Blechman 2006 14 7
Talking Points 1. Problem: Children with special health care needs (CSHCN) require higher quality services at lower expense to families. State governments strive to reduce public costs for long-term health care. 2. Solution: Consumer-controlled, interoperable PHRs (CE/PHR) can satisfy the seemingly contradictory needs of CSHCN and state government. : A low-income mother employs a CE/PHR, with state agency help, to apply for benefits and to coordinate and monitor a child s care. A regional crossagency alliance uses CE/PHR enterprise accounts to avoid mistakes and reduce duplicative, wasteful effort. Elaine Blechman 2006 15 Framework for a Regional Health Care System 2. Solution Wagner, E., Austin, B., & Coleman, C. (2006). It takes a region: Creating a framework to improve chronic disease care. Oakland, CA: California Elaine Blechman Health Care 2006 Foundation. 16 8
A CE/PHR Can Solve CSHCN & Government Needs 1. Child has a lifelong, holistic PHR record 2. Individual PHR privileges are role-, relationship-, content-based 3. Authorized PHR users are authenticated, audited 4. PHR data are persistent, source-authenticated 5. Via the PHR, parents (or delegates) control data exchange with providers, payers, agencies 6. Via the PHR, parents (or delegates) coordinate individualized care plans, mobilize, monitor services and payments 7. Providers, payers, and agencies reuse PHR data to satisfy business needs 8. State agencies, public and private payers reuse PHR data to leverage resources, remedy gaps, and remove barriers to care. 2. Solution Elaine Blechman 2006 17 Types of PHRs 2. Solution Exchanges Data with EHRs & Apps Consumer Controls User Privileges No Yes No View Freestanding Yes Tethered CE/PHR Elaine Blechman 2006 18 9
View (tethered) PHRs give parents glimpses of their children s records in a provider (HMO, RHIO) EHR. 2. Solution Payer Payer App Consumer View/ Tethered PHR PHR Index PHR Query Feed Record Locator Query Feed Feed EHR Index EHR MedR Provider EHR Pharma App Thanks to Charles Parisot for the initial rendering of this figure. Elaine Blechman 2006 19 2. Solution Consumer CE/ PHR PHR Index PHR Agency Feed Query Feed State Agency 1 n App EHR Index EHR MedR Payer Provider 1 n EHR Pharma App Payer 1 n App CE/PHRs allow parents (or agency care coordinators) to control exchange of children s s records with diverse providers, payers, and state agencies. Thanks to Charles Parisot for the initial rendering of this figure. Elaine Blechman 2006 20 10
Marjorie s s son John is a child with SHCN. Marjorie gets a Caregiver PHR for John at a state agency s local storefront. Elaine Blechman 2006 21 First, Marjorie and her agency partner, Laurie, apply for SSI benefits for John. From the Caregiver PHR dashboard, they access Vital Information Logs. Elaine Blechman 2006 22 11
Marjorie, with Laurie s s guidance, enters data and uploads attachments into Vital Information Logs (e.g., ICD9 diagnoses, diagnostic summaries). Elaine Blechman 2006 23 Marjorie and Laurie grant role-,, relationship-,, and content-based access privileges to individual representatives of providers, payers, and state agencies. Elaine Blechman 2006 24 12
Marjorie and Laurie generate and print an emergency responder card for John s s backpack that is autopopulated from current Vital Information Logs. Elaine Blechman 2006 25 Marjorie and Laurie generate and submit electronic benefits applications (mostly autopopulated fromvital Information Log entries) to likely payers. Elaine Blechman 2006 26 13
After benefits are approved, Marjorie and Laurie identify providers and authorize some to view John s s care plan, autopopulated with summaries of Vital Information Logs. Elaine Blechman 2006 27 Now Marjorie and Laurie use John s s care plan to delegate action items to providers, schedule events and reminders in providers calendars, and send automated reminders and follow-up inquiries to providers and their supervisors. Elaine Blechman 2006 28 14
Laurie, from her Caregiver enterprise account, accesses an automated cross-agency, cross-payer, workflow checklist. This workflow engine supplies Laurie with requisite online forms and insures she complies, on time, with all necessary procedures. Elaine Blechman 2006 29 Laurie s s supervisor and her agency director, employ the Caregiver enterprise account to manage, audit, and report about clinical, fiscal, human resource, and administrative matters. Elaine Blechman 2006 30 15
A CE/PHR Can Solve CSHCN & Government Needs 1. Child has a lifelong, holistic PHR record 2. Individual PHR privileges are role-, relationship-, content-based 3. Authorized PHR users are authenticated, audited 4. PHR data are persistent, source-authenticated 5. Via the PHR, parents (or delegates) control data exchange with providers, payers, agencies 6. Via the PHR, parents (or delegates) coordinate individualized care plans, mobilize, monitor services and payments 7. Providers, payers, and agencies reuse PHR data to satisfy business needs 8. State agencies, public and private payers reuse PHR data to leverage resources, remedy gaps, and remove barriers to care. 2. Solution Elaine Blechman 2006 31 Next Steps: 1. Regional implementation of CE/PHRs for low to high income children with SHCN. 2. Evaluation of barrier removal, usage, and satisfaction among parents, children, providers, payers, and agencies. Elaine Blechman 2006 32 16
Selected References American Academy of Pediatrics Committee on Children with Disabilities. Care coordination: Integrating health and related systems of care for children with special health care needs. Pediatrics, 1999; 104(4): 978-981. Anderson, G.F. (2003). Physician, public, and policy maker perspective on chronic conditions. Archives of Internal Medicine, 163, 437-442. Bethell CD, Read D, Stein RE, Blumberg SJ, Wells N, Newacheck PW. Identifying children with special health care needs: Development and evaluation of a short screening tool. Ambulatory Pediatrics 2:38-48. 2002. Blechman, E.A., & Elkin, P. (2006). In the national interest: Consumer-controlled, interoperable personal health records. Unpublished ms., U. of Colorado-Boulder. Blumberg SJ, Olsen L, Frankel M et al. Design and Operation of the National Survey of Children with Special Health Care Needs, 2001. National Center for Health Statistics. Vital Health Stat 1(41). 2003. McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, & Strickland B. A new definition of children with special health care needs. Pediatrics 1998; 102(1):137-140. National Center for Health Statistics. Health, United States, 2002 with chartbook on trends in the health of Americans. Hyattsville, MD 2002 (Table 58). U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2001. Rockville, Maryland: U.S. Department of Health and Human Services, 2004. Wagner, E., Austin, B., & Coleman, C. (2006). It takes a region: Creating a framework to improve chronic disease care. Oakland, CA: California Health Care Foundation. Elaine Blechman 2006 33 17