Patient-centric health IT, such as electronic personal health records, promises to empower consumers to obtain and manage their own health information. While positive, this emerging trend of consumerism will raise new policy and operational challenges for healthcare providers.
Data repositories make debut
Consumers may authorize a health data repository that is not affiliated with any care delivery organization to play the role of custodian for their personal health information. Microsoft’s HealthVault, Google Health, and the employer-sponsored Dossia initiative, for example, all received significant attention in 2007 for their promises to bring consumer-controlled health records to the masses. If these service providers find a market in the consolidation of consumers’ fragmented health records, healthcare providers will be affected in ways not fully anticipated today.
Consumer-centric health data repository models take various forms, but all offer tools for managing information relevant to lifelong health and wellness. Some are essentially a technology platform or a base to leverage an array of online health services and applications. Microsoft HealthVault, launched in October 2007, teams its data repository with a specialized health search engine and a platform that will support home monitoring device interfaces. The prototype Google Health application contains similar features and is expected to make a public debut in 2008. Intuit and Ingenix (a company of UnitedHealth Group) have teamed to deliver Quicken Health, a product that offers tools to help consumers manage out-of-pocket health expenses and organize claims history.
The flow of healthcare data is essential to the long-term viability of all health data repository models. Data will potentially come from doctors, hospitals, pharmacies, insurers and consumers themselves. But here’s the thing: doctors create and control the vast majority of information that will likely be relevant to individuals compiling a comprehensive view of their health records for both their use and for sharing with other providers. Yes, claims data from health plans, insurers, and other payers is also a potentially viable data source. But the known limitations of claims data in comparison with clinical data (for instance, reimbursement codes do not provide sufficient detail on treatment or outcomes) tend to render them much less relevant to consumers and providers alike. There is no getting around the fact that clinical data are and will continue to be the gold standard for longitudinal health records.
But how does a consumer, acting on his own, manage to populate his health record with clinical data? Today, any individual looking to obtain their own health records can, by legal right, ask their providers for copies. With few exceptions, they will receive paper copies — even if the provider has an electronic medical record system. Basically, consumers or their service provider are faced with two options for getting paper records into an online health data repository:
1. Fax or scanning the paper documents into an electronic file (does not support interoperability or automatic insertion of data into fields) or
2. Manual re-keying (inefficient and error-prone).
In a dilemma
Consumers will value timely, accurate, and comprehensive information in personal health technologies, but few will have the skills, resources, or patience to manually populate and update a database. With the data flow limitations that exist today, can consumer-centric health information repositories achieve and sustain a critical mass of users? This question underscores the dilemma for the information technology giants as they compete to dominate consumer health information access.
Relevant content and ease of use will drive the value proposition and market demand for health information repositories. This value can only be realized through the flow of health information in a structured and codified electronic format. The data repositories understand this and are forging strategic alliances with firms that offer data and devices (e.g. glucometers, blood pressure monitors) compatible with their technology platform. Still, auto-population of disparate sources of acute and primary care data into a single integrated system is no easy task and would require significant action by healthcare providers.
If HealthVault, GoogleHealth, and Dossia are successful in increasing pressure for electronic disclosure of clinical data, healthcare providers with electronic medical record systems will likely respond:
“We’re not willing or able to respond to requests for electronic disclosure of health information in competing formats.”
“We’re uneasy about the privacy standards of entities not covered by HIPAA.”
“Who’s going to pay the developmental and maintenance costs associated with moving from paper to electronic disclosure of health records?”
“And what’s in it for us?”
Standards: There is work in progress to address the absence of a common framework for the transfer of health information from provider-based electronic health record systems to consumers or their authorized agents. The most notable milestones, of late, include the endorsement by the Healthcare Information Technology Standards Panel (HITSP) of a set of Consumer Empowerment Interoperability Specifications and the HL7 Continuity of Care Document (CDD) as a summary record standard. Still, a standard summary does not convey the full clinical information set in an ideal context for clinical care. Clearly, implementing these and other potential solutions is as complicated as the problem itself.
Privacy expectations: HIPAA and even stricter state privacy laws that provide protections for disclosures of information by covered entities may not apply to health data repositories. Since some or all legal protections for consumers may be lost when data is transferred from providers to a non-covered entity, many observers are anxious to see how consumer privacy expectations play out against health data repository strategies.
Costs: Few provider organizations with clinical IT systems have budgeted electronic health information exchange with consumers into their strategic plans. At issue are one-time implementation and on-going operational costs associated with establishing an interface between a provider’s clinical systems and a consumer’s data repository. This includes costs as diverse as software customization and maintenance, user training, technical support, workflow redesign, and productivity loss during implementation.
There’s clearly a lot of work to be done to make a compelling case to providers for the transition from paper to electronic disclosure of health records to consumers.
That might be changing, however, several pressure points have emerged that will magnify the significance of consumer-centric health information exchange for providers.
First, citizen empowerment and consumer access to protected health information are recurring themes in federal health IT legislation, which may eventually mandate providers to action.
Second, the Federal Employees Health Benefit Program is requiring provider compliance with federal standards to promote needed interoperability between employee personal health records and provider-based EHR systems.
And finally, as health data repositories establish joint ventures and other strategic partnerships with healthcare providers, those not party to the agreements may fear being left behind and at a competitive disadvantage.
The uncertain market demand for health data repositories affords healthcare providers an opportunity to observe the evolving consumer-centric health IT landscape a while longer. But this calm may soon become a flurry of activity. Healthcare providers should use this moment wisely and confront the barriers and perceived risks to electronic health information exchange with consumers.
Brian Raymond is a senior policy consultant with the Oakland, Calif.-based Kaiser Permanente Institute for Health Policy.