Harvard researchers cast doubt on regional health data exchange

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Dec. 10 – An electronic clinical data exchange across the United States is far from a reality with few organizations facilitating and succeeding with such an exchange, according to a study by Harvard researchers published in Health Affairs.

The study, based on a 2007 survey of 145 regional health information organizations (RHIOs), is a comprehensive assessment of the state of electronic health data exchange in the United States.

At the time the survey was conducted, however, nearly one-quarter of the 145 RHIOs were defunct and only 20 initiatives were deemed to be of at least modest size and exchanging some clinical data. Five of those RHIOs exchanged data for a specific population, such as Medicaid enrollees, the uninsured, or patients with a chronic illness like diabetes and only 15 RHIOs exchanged clinical data across a range of patient populations.

“These findings suggest that nationwide electronic clinical data exchange will be much harder than what many people have envisioned,” said lead study author Julia Adler-Milstein, a doctoral candidate in health policy at Harvard University.  “The expectation has been that we will have RHIOs throughout the country that bring together all the providers in their region and engage in comprehensive data exchange.  In reality, we’re seeing few established RHIOs and those that are established only have a small number of participating groups exchanging a narrow set of data.”

According to Adler-Milstein, the most successful RHIOs started by focusing their efforts on exchanging test results from laboratories and imaging centers, which she said is where “the clearest return on investment lies.”  Exchange of other data – such as clinical notes – is much more difficult to achieve, partly because cost savings from such initiatives are less tangible, she said.

The current approach to establishing RHIOs tends to rely on small start-up grants with the hope that participants will be willing to pay the RHIO once data exchange is initiated, according to the researchers.  The survey findings suggest that some RHIOs are struggling with the transition to self-sufficiency as eight of the 20 moderate-size RHIOs reported that they continued to depend heavily on grants.  In contrast, nine never received grant funding and 13 RHIOs said they collected recurring subscription or transaction-based fees from participants to stay in operation. 

“If we want RHIOs to attain the vision of comprehensive health information exchange, we need to increase our investments in them,” Adler-Milstein said.  “Otherwise, many of these RHIOs will be unable to sustain themselves under the current market-oriented approach.” 

Other facilitators of success include:

  • Data standards that enable different computer systems to “talk” to each other;
  • Health data privacy and security safeguards;
  • Community buy-in including overcoming healthcare providers’ competitive concerns; and
  • Financial incentives to provide high-quality, cost-effective care.

“While many RHIOs are struggling, some have figured out a way to sustain themselves and that is a reason for hope,” said co-author Ashish Jha, assistant professor at the Harvard School of Public Health. Both Jha and Alder-Milstein suggest that meaningful financial incentives for high quality, efficient care will help advance clinical data exchange. “Either we have to create the right market conditions or have much greater public investment, but the vision of a national health information network is unlikely to come to fruition without one or the other,” said Jha.