219113 Electronic Care Coordinator: An Innovative Personal Health Record and Care Management Tool for Individuals Affected by Traumatic Brain Injury

Monday, November 8, 2010 : 2:50 PM - 3:10 PM

Eileen Elias, MEd , JBS International Inc., North Bethesda, MD
The market for Personal Health Records (PHRs) is growing dramatically. These products are being developed and offered by major healthcare systems, insurance companies, corporate consortiums, and private vendors. Selecting the right product in this space can be difficult for many reasons, including the fact that different healthcare consumer groups seek products designed to support the unique ways in which they access the healthcare system. Among these groups, are individuals with traumatic brain injury (TBI) and their caregivers. According to recent estimates, 3.17 million people currently live with a TBI. TBI is highly complex and can lead to lifelong bio-psycho-social challenges. Additionally, unlike service systems that are highly integrated and coordinated, systems for TBI rehabilitation are highly fragmented. In a 2006 report, the Institute of Medicine stated the following: "…many people with TBI experience persistent, lifelong disabilities. For these individuals, and their caregivers, finding needed services is, far too often, an overwhelming logistical, financial, and psychological challenge…Yet efforts to address these issues are stymied by inadequate data systems, insufficient resources, and lack of coordination." PHRs represent an opportunity for this marginalized health consumer group to leverage the value of health information technology to manage their rehabilitation and recovery with extraordinary sophistication toward a life of full participation in the community. The Brain Injury Navigator, a web-based information resource center with a personal health management platform (i.e. the Electronic Care Coordinator) is designed for those affected by TBI specifically for this purpose.

Learning Areas:
Chronic disease management and prevention
Communication and informatics
Other professions or practice related to public health

Learning Objectives:
Objective One: Discuss PHRs including the different types and their advantages and limitation, value case, adoption levels, and barriers and drivers to adoption. Objective Two: Discuss privacy and security issues that underscore the major concern among PHR adopters, especially consumer groups with disabilities. The discussion will include attention to the Health Insurance Portability and Accountability Act (HIPAA) and its extension by the American Recovery and Reinvestment Act (ARRA), various perspectives on the privacy and security concern, a basic analysis of PHR products on the market and their level of privacy and security protections, and guidance on evaluating the level of privacy and protection offered in a PHR. Objective Three: Describe and explain the Brain Injury Navigator (BIN)-- a web-based information resource center for individuals with TBI, their caregivers, family members, and healthcare providers as well as a short introduction to the Electronic Care Coordinator (ECC), the BIN’s personal health management platform.

Keywords: Health Care Quality, Vulnerable Populations

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Eileen Elias, M. Ed, is a Senior Advisor on Mental Health and Disability at JBS International. She brings more than 40 years of experience as a public health disability-based policy leader, manager, analyst, planner, trainer, and educator with a record of transforming health and human service systems, including health information technology (Health IT) including personal health records (PHRs) for persons with a disability, TBI rehabilitation service delivery, and systems change at the international, Federal, State, and local levels. Her long record of accomplishment in working collaboratively to solve critical challenges includes for- and not-for-profit sectors and providers, public and private insurers, academia, advocates, family members, and consumers. She is the Adjunct Professor for the Sargent College of Health and Rehabilitation Sciences at Boston University. From 2003-2008, Ms. Elias was the Deputy Director of the U.S. DHHS’ Office on Disability. In 1999, she was a Senior Policy Analyst for the DHHS Substance Abuse Mental Health Services Administration Office on Policy, Planning and Budget (OPPB). From 1991-1996 Ms. Elias was the Commissioner for the Commonwealth of Massachusetts, Department of Mental Health.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.