Demo PHR
To provide convenient access to a proof-of-concept PHR, we have set up an account for a dummy patient. To access the demo, navigate to http://is.ieis.tue.nl/staff/pvgorp/myphr/?username=tester2@pietervangorp.com and enter the password tmp123. This will sign you in as the dummy patient. We have uploaded some example radiology scans (example 1) as well as the full genome sequence of the hypothetical patient (example 2). For a basic walkthrough of the patient-oriented functionality, consider the DICOM Example. The section about the Genome Example does not provide usage instructions anymore. Instead, it explains which architectural aspects are illustrated specifically by this second example.
DICOM Example
The example radiology content is based on three DICOM based CD-ROMs that are owned by one of the principal scientists of the MyPHRMachines project. In practice, you would use your own account to upload your own PHR data (not at all restricted to DICOM content) and share it with your GP and other physicians.
The example DICOM CD requires the Microsoft Windows operating system. Therefore, to view the CD content, you have to start a remote Windows virtual machine in MyPHRMachines. You can start a new session by simply pressing the huge green button on the main screen in MyPHRMachines:
MyPHRMachines protects the load of its servers by means of load balancing and session scheduling. There should be sufficient resources to let you walk through this tutorial now but in case too many others are doing this currently, you can schedule the Windows session some time in the future:
Once your session is active, a pop-up browser window will open automatically. The window enables you to use the remote virtual machine directly from your browser (provided that you have Java support):
You can then double-click the DICOM CD images and the embedded DICOM viewer (that came with the original radiology CDs) will launch automatically:
You can then inspect the demo X-Ray and MRI content as if it were executed on you local Windows XP/7/... machine... but using MyPHRMachines you can do this using your Mac or Android device too, without any hassle.
To conclude this system walkthrough, consider the [provide external access] link in your MyPHRMachines session (see also http://screencast.com/t/plK4mlu7tT7K). This brings you to a screen where you can enter any e-mail address (e.g., that of your GP or of a specialist that will give you a second opinion for a scan interpretation). The recepient will receive a unique link that enables him/her to access your virtual machine session as long as you keep it running.
Genomics Example
As a second use case of MyPHRmachines, we provide the full genome of a dummy patient as well as specialized genotype analysis software [ screencast ]. To run this software, start the virtual machine called XP-TUe_Promethease.vdi. The virtual machine contains the public, fully sequenced genome data from Sam Snyder and the corresponding version of the Promethease software to analyze such data. The Promethease report shows that a particular disease could be passed to the children of the example patient.
The key feature of MyPHRmachines that is illustrated by this example is that very complex computational services can be offered effectively and securely in the trusted MyPHRmachines cloud. In this example, the genome sequence is not sent to the vendor of Promethease (or any other software vendor for that matter). Patients store their genome sequence data in their personal folder, which is only mounted when they start a VM session. Other patients, or software service providers have no access to the data that is arguably very sensitive for employers, friends and family. This is in strong contrast to dedicated commercial genome analysis services, such as 23andme.com. 23andme.com can store all your data and you cannot monitor what happens with it, today or any time in the future. With MyPHRmachines, you don't have to trust such individual service providers. Instead, you trust the platform. Users do not have to bother about Facebook-style "permit access" popups when using services on MyPHRMachines: by inverting control in the architecture, the platform provides a hard guarantee that individual "app" providers never get access to patient data. Obviously, the MyPHRMachines platform itself does run on some physical infrastructure but this is unavoidable and still it is more trustworthy to a central infrastructure that can be government-controlled and audited by the licensed and highly educated professionals rather than having patient data on the servers of individual service providers (no matter what they promise in their terms of service).
For the sake of the demonstration on this website, we assume that the account tester2@pietervangorp.com belongs to Hongiiv. Therefore, when tester2@pietervangorp.com starts a session in MyPHRmachines, the data from http://www.snpedia.com/index.php/User:Hongiiv is mounted to the VM. When signing in with another account, this data will not be available (feel free to try this). The demo VM image does contain a genome that is available to whomever launches a VM session: XP-TUe_Promethease.vdi contains a sequenced genome of Sam Snyder as example data (to illustrate also to MyPHRMachines without a sequenced genome, what the Promethease service could offer them). In summary: the Hongiiv genome is only visible to tester2@pietervangorp.com, the Snyder genome is visible to any user. Most importantly, even when tester2@pietervangorp.com mounts his data (the Hongiiv genome) to a VM session of XP-TUe_Promethease.vdi, the MyPHRMachines platform ensures that it can not be sent to the service provider (in this example: the user that created the image with the Promethease software). This is real privacy, beyond "promises" in app-specific "terms of service" contracts. HealthVault and related platforms such as Indivo do not offer this. Therefore, we are considering building a MyPHRMachines plugin for these platforms.