Leading Patient and Provider Access Hurdles in Health Information Exchange

August 8, 2016

The pursuit of a fluid patient record has birthed boundless tech initiatives in US healthcare and the driving force at the crux of those auspicious efforts is health information exchange (HIE).

While the HIE moniker can represent both the act of mobilizing health information between organizations (typically within a given region or health system) and the organizations facilitating that exchange, the goal is singular: a longitudinal patient record that moves and grows with the patient over time. Designed to cultivate collaboration and transparency among fragmented caregivers, HIEs offer providers access to more complete patient records at the right place and the right time to better inform clinical decision making and improve care outcomes.

The ONC presently recognizes three types of health information exchange:

  1. Directed Exchange: The ability to securely send and receive patient data electronically between providers (typically to support coordinated care).
  2. Query-based Exchange: The ability for providers to electronically find/request patient data from other providers (typically to support unplanned care).
  3. Consumer Mediated Exchange: The ability for patients to electronically aggregate/control the use of their health information among providers.

The bulk of the HIE groundwork laid out to date falls under the umbrella of directed exchange. Federal funding helped kick-start state HIE programs beginning in 2010, with annual or monthly subscription fees (paid by health organizations to the regional HIEs those facilities elect to connect with) constituting the bulk of HIE’s operating revenue beyond that initial funding.

For many state and community HIEs, financial sustainability has been a barrier to success, as have issues related to interoperability, the technical practice of sharing and interpreting data between systems.

While some cite the lack of a universal national model as the culprit in failed HIE instances, entities like Great Lakes Health Connect (GLHC) – a successful, self-sustaining, private HIE – see things differently.

GLHC is Michigan’s largest HIE, connecting 85 percent of the state’s acute care beds, 4,000 provider offices, and 6.5 million unique patient records. As GLHC Marketing and Communications Manager Brian Mack puts it, “Rather than an endorsement of a rush to a national HIE standard, the varied range of progress in HIE development from state to state highlights the need to focus concerted energy on bringing all states up to a minimum level of connectivity. Without it, establishing a national standard becomes that much more challenging.”

To that end, the Sequoia Project, an independent advocate for interoperability and operator of the nation’s largest HIE, was established in 2012 to help address challenges in effective, national patient data exchange. The non-profit’s initiatives include a Testing Program to validate exchange practices for its eHealth Exchange members, and Carequality, a public-private collaborative dedicated to establishing a common interoperability framework.

FHIR (Fast Healthcare Interoperability Resources) Specification, HL7’s latest data structure and standardization framework, has also emerged as a promising new standard for exchanging health information electronically.

As HIEs work through the technical barriers to Directed and Query-Based Exchange, the industry faces new obstacles related to patient involvement in Consumer Mediated Exchange.

Some healthcare industry stakeholders suggest that “increasing the consistency with which patients engage with new technology will be critical in achieving higher-quality outcomes at a reduced cost.” But what does patient involvement in HIE look like?

Patient data privacy and security is a hot topic in healthcare at large and HIEs in particular, and rightfully so. HIE’s patient consent process falls under either opt-in or opt-out classification and varies from state to state.

GLHC’s Brian Mack elaborates: “Michigan, for example, is an opt-out state. [That] means that all patient records in the state are automatically accessible in the community repository, unless a patient specifically requests they not be. What this means for us as an HIE is that we don’t need to market directly to consumers to get them to agree to have their records shared. It also significantly limits the need for me as a marketer to focus much energy or resources on building a business-to-consumer presence for GLHC.”

“Louisiana is an opt-in state, and I know that they do a lot of direct patient-engagement work, including [operating] a central portal that all of their participating hospitals have endorsed. Basically, the burden of getting patients to opt-in is greater than getting them to engage with the hospital directly once they are on board. The competitive dynamics, as well as Meaningful Use requirements, are disincentives for building a universal patient portal. The hospitals, understandably, want their patients to be accessing their health information through [the hospitals’] proprietary portals. They will collaborate across competitive lines to assure that the data is shared securely and seamlessly across the state because everyone benefits from having access to that information, but they retain their own interests in maintaining ownership of their patient relationships.”