Health information exchange (HIE) development experiences in a number of European nations should give HIE innovators in the United States both some hope and some cause for concern, as they consider the many hurdles facing HIE progress in this country. Indeed, says one expert on international healthcare IT development, lessons learned from Europe offer the classic “glass half-full or half-empty” conceptual quandary. For CIOs helping to lead their organizations and communities along the first steps of inter-organizational connectivity, the message is clear: we've got a very long way to go to resolve some basic issues.
The experiences of the U.K., the Netherlands, and Denmark in HIE speak to some of the challenges that American HIE leaders face in the future.
Among the issues that some European countries have taken on - head-on - include the creation of a national patient identifier and nationwide patient identification; privacy and security of patient data; governance and communications around patient data sharing, and the technical architecture, standards, and certification needed to establish and broaden nationwide health information exchanges. It has taken several years to work out some of these issues in the Netherlands, Denmark, and the United Kingdom, which were special countries of focus in a study co-authored by Fran Turisco, principal researcher in the Waltham, Mass.-based Emerging Practices division of the Falls Church, Va.-based CSC. The study, entitled “Accomplishing EHR/HIE (eHealth): Lessons from Europe,” was published in late 2009.
For example, Turisco says, “In researching this topic, I found that the fundamental issue around patient data ownership and privacy issues is around communication, in terms of letting patients and healthcare consumers know ahead of time what the parameters are, giving them choices, and setting the right expectations.” One big issue, she says, is the question of opting in or opting out” of whatever protocols are created in terms of the sharing of patient-identifiable data.
So, for example, when the government of the Netherlands created a nationwide HIE, “They sort of forgot about communicating the terms of opt-in/opt-out to patients, and realized after the fact that they needed to establish patient consent to share data, and that delayed communication freaked people out,” Turisco notes. Two lessons learned are important in that context, she says. First, of course, sets of rules on patient consent, on release of information have to be established in advance. And second, whatever protocols are envisioned have to be incorporated into the building of the infrastructure itself.
Furthermore, Turisco says, it's far easier and more useful to create “opt-out”-based permissions systems, rather than “opt-in”-based ones. But, according to Turisco, even in opt-out-based permissions systems, architecting and implementing the systems has required years of optimization in European countries.
Another issue that has been resolved, over time, in some European countries, is that of a national patient identifier number. In the Netherlands, for example, Turisco notes, it took several years to get a national patient identifier approved in the nation's parliament, primarily because of considerable turnover in parliament members. Meanwhile, in the U.K., a national patient identifier was put in place, but it wasn't being correctly captured across the various health systems, called trusts, nationwide; and considerable work had to be done to establish consistency and reliability of identification across the nationwide system.
Patient authorization for data access in three European countries
Government assumes that patients want data to be viewable by other authorized providers; patients can request to opt out, or opt in, with restrictions.
Patients do not own their data. They can opt in or opt in with restrictions, but few have selected the latter.
Patients determine if they want to opt in, opt in with restrictions, or opt out.
“Accomplishing EHR/HIE (eHealth): Lessons from Europe,” Harald Deutsch, M.D., Fran Turisco, CSC, 2009
The culture question
Given the challenges that European nations like the U.K., Denmark, and the Netherlands have been addressing around HIE, what are the prospects for the handling of such issues in the U.S.? Like others who have analyzed the evolution of HIE in different countries, Turisco believes that the immense differences in public policy, healthcare system organization, and culture between American society and those of many European societies will only make the path forward on this side of the Atlantic more challenging. As just one example of cultural differences, people in the Nordic countries, including Denmark, are far more trusting and accepting of government control than Americans, she says.
In that regard, one of the transatlantic differences, of course, is the marquee-level issue of creating a national patient identifier, which remains highly politicized in the U.S., where suspicion of such an identification number remains high across the country nationwide. But, says Turisco, even if that issue were resolved in a relatively timely way, the complex organization of the U.S. healthcare system, and the very fact that the federal government cannot direct activity across the healthcare system as the national governments do in European countries, all mean that HIE development at the national level is inevitably more distant than many in U.S. healthcare might realize.