patient health data

Back to School: Legal Challenges for Teachers (Sharing Patient Health Data)

Lila Bailey, September 3rd, 2009

As students around the world return to school, ccLearn blogs about the evolving education landscape, ongoing projects to improve educational resources, education technology, and the future of education. Browse the “Back to School” tag for more posts in this series.

For this post in my Legal Challenges for Teachers series, I will focus on challenges for medical education. Although copyright issues are a problem for medical education as in any other educational area, those who educate and train doctors face many additional hurdles.

According to Open University,

Ethiopia has a population of 84 million people served by fewer than 1800 doctors, most of these in private practice. People are suffering and dying because they cannot get access to a doctor when they need one.

To combat this problem, the Ethiopian government is planning to create 11 new medical schools and 8000 new places for medical students to obtain training. Open University is working with the Ministry of Health in Ethiopia to pilot open and distance learning medical training with students at the recently opened St Paul’s Millennium Medical School in Addis Ababa.

Given the desperate need for new doctors in Africa and around the world, and the distinct lack of trained doctors to teach them, many medical education programs are turning to digital technologies and distance learning for innovative means of educating new doctors. One interesting model being used is the Virtual Patient (VP). VPs are interactive computer simulations of real-life clinical scenarios, and may consist of many learning objects (e.g., text, images, animations, and videos). VPs are becoming recognized as highly effective training tools.

Yet while the use of distance education, such as via Open University, and digital technologies, such as VPs, have the potential to vastly expand the number of doctors with access to quality clinical training resources, it is not without its own challenges. Access to information about real life patients is necessary to develop VPs and other effective clinical training resources. VPs are very time-consuming and expensive to develop, so it is necessary to be able to share existing VPs in a manner that is adaptable to different cultural, linguistic and educational scenarios. Therefore, a prerequisite to the success of these projects is the ability to actually share and reuse the relevant digital content (i.e., the patient information). However, sharing data about patients is subject to numerous laws and regulations, including considerations of confidentiality, patient privacy and protection and control over patient data. This makes sharing data between institutions quite difficult, and even more so when the institutions are located in different countries having different legal requirements.

The Electronic Virtual Patient, or eViPs, program is a collaboration between nine universities across Northern Europe and MedBiquitious, which helped to develop the technical standards used in e-based healthcare education. eViPs has managed to compile a repository of 320 VPs which will soon be made available under a Creative Commons license. In order to share the health data that was used in the development of the VPs contained in the repository, full consent of the participating patients had to be obtained, as detailed in this report. It is wonderful to see collaborations such as this one that have been able to meet the challenges particular to sharing patient health data.

Unfortunately, the ability to share patient health data is still limited to specific projects and institutions. I wonder whether it is possible to develop even more robust legal tools that will allow medical educators to share patient data across projects and across borders, while still maintaining appropriate patient confidentiality. Many lives depend on our ability to do so.

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