Lifelong Personal Health Data

By Pieter Van Gorp and Marco Comuzzi

NOTE: This is an overview of the entire article, which appeared in the January 2014 issue of the IEEE Journal of Biomedical and Health Informatics.
Click here to read the entire article.

Imagine being on vacation in a foreign country and experiencing a health emergency; a frightening scenario, to say the least. Now imagine emergency room physicians there being able to reproduce your original health records through a cloud-computing software system so they are better able to assess your medical needs.

This article presents MyPHRMachines, a cloud-based Personal Health Record (PHR) software system in which a patient’s electronic health records (EHRs) are owned by the patient. Currently, MyPHRMachines is an academic prototype that provides infrastructure-as-a-service (IaaS) to (1) store and share subsets of patient data and (2) deploy and use specialized software in remote virtual machines. A significant point here is that the data and software are separated so that the data can be used in other applications. This allows the patient to share his or her remote virtual machine session with selected caregivers who can simply access the data through a Web browser.

Technical architecture of MyPHRMachines.

MyPHRMachines allows patients to develop PHRs that are durable across space and time dimensions, and this article provides two use cases that illustrate the system’s two key principles. The first use case scenario involved a patient with a lifelong back injury condition, illustrating how having access to his entire medical history over his lifetime would be extremely beneficial. The second use case involved genomic diagnostics where a patient’s DNA readout could be very useful to the patient (in personalized medicine) but which could be used without the patient’s knowledge and consent, possibly to the patient’s disadvantage. In this case, the security of the data was of major concern.

Based on results from the two use case scenarios, the researchers were able to derive a set of four requirements for PHR systems, two from each case. The first case focused on the space dimension highlighting the need to build PHR systems that should allow patients to reproduce their medical data to any interested care institution regardless of their physical location and/or the maturity of their IT support. Also, PHR systems should allow patients to reproduce their lifelong medical history to any interested care institution.

The requirements obtained from the second use case focused on important privacy issues. PHR systems should allow patients to selectively share their PHR data to interested care institutions and should be confident that their PHR data would not be used improperly by the care institutions or the providers of application software.

The article discusses some limitations of the current implementation of MyPHRMachines and urges further investigation into the relationship among processes, people, and business models. For example, how readily will MyPHRMachines be accepted and adopted by patients, physicians, or administrative personnel, and how could the system be economically profitable in the healthcare ecosystem?

Finally, it is important to note that while the current implementation of MyPHRMachines uses real data in connection with real medical applications software, it has yet to be used in clinical situations by real patients.


Pieter Van Gorp received the Ph.D. degree in software engineering from the University of Antwerp, Antwerpen, Belgium. He is investigating and extending the applicability of transformation technology to software modeling and health information system challenges since 2002. Since 2008, he has been an Assistant professor in the School of Industrial Engineering at Eindhoven University of Technology, Eindhoven, The Netherlands. Previously, he was a post doctoral researcher at the University of Antwerp. He has published various conference and journal papers. He has developed various software prototypes, including SHARE and MyPHRMachines. He also teaches various courses, covering topics such as model-driven engineering, business process simulation, and health informatics. He has participated in the organization of national and international research events. He is the PC Chair of the Foundations track of ECMFA 2013. Recently, he has visited the Clinical Informatics Research and Development group from Partners HealthCare to study the potential role of MyPHRMachines in the U.S. health care system.

Marco Comuzzi received the Ph.D. degree in information echnology from Politecnico di Milano, Milano, Italy, in 2007. He is currently an Assistant Professor at the Eindhoven University of Technology, Eindhoven, The Netherlands. He has been a Visiting Researcher at the McCombs School of Business, University of Texas at Austin, Austin, USA, and a Post-Doctoral Research Fellow at City University London, London, U.K. More recently, he has been a Visiting Lecturer at Ulsan National Institute of Science and Technology, Ulsan, Korea. His research interests concern the design and management of process-oriented service-based systems. In particular, he has focused on architectures for the automated negotiation of services quality and on the monitoring of service contracts and SLAs. He has published several papers in international journals and conference proceedings and he has been involved in several EU and national research projects.