The study cited here seems to me to be of considerable importance to all of us here in Australia as well.
Should HIE leaders in the U.S. look to European progress for clues going forward? Yes, with caveats, says one international IT expert
by Mark Hagland
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.
Much more is found here:
The source article reference is:
Healthcare Informatics 2010 April;27(4):32-34
The original source is here:
Accomplishing EHR/HIE (eHealth): Lessons from Europe
Dr. Harald Deutsch, Fran Turisco
Health reform, a top priority for the Obama administration, requires EHR and HIE technology solutions to be successful. The recently enacted Health Information Technology for Economic and Clinical Health (HITECH) Act is re-invigorating discussion activities surrounding state and regional eHealth efforts by addressing a number of the current obstacles - interoperability, privacy and sustainability.
Understanding the risks and issues from similar efforts can help the U.S. to avoid making the same mistakes. Fortunately, comparable efforts do exist. Our first-hand experience in Europe (Denmark, the Netherlands, and three regions in the UK) has enabled us to identify major decision points, best (exemplary) practices, and lessons learned that are transferrable to U.S. projects. While the size of the European efforts is far smaller than the U.S., they are comparable to our state efforts and often have encountered many of the same issues under discussion at the national level.
I mentioned this report once before on the blog last year but having now browsed it closely it is clear it needs careful review, and the lessons need to be carefully considered.
I hope NEHTA as taken all the lessons on board – they are pretty important!