Focus on privacy?

[MyPHRMachines]

MyPHRMachines seems to focus on privacy... do you want to hide information from physicians?

[Pieter Van Gorp]

No, not at all.  Our vision is conform with the general PHR vision, which is exactly opposite from hiding information from physicians: 

Patient Health Records (PHRs) are a set of computer tools that allow people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it [Kaelber et al. (2008)].

The point is that when not using PHRs, patients are suffering from interoperability problems of EMR systems.  Because of these problems, even trusted physicians often do not have access to the information that they need.  Putting as much health related information with the patient, in a PHR, can solve this: we expect patients to collect as much information as possible in their PHR and then share this information meaningfully to their caregivers.

Our novel support for protecting patient privacy better is not intended to encourage patients to hide information from physicians.  We are convinced that good trust relationships with caregivers are essential and systems should not get into the way of that.  

Elaboration/details:
However, we also believe that health information systems lag behind so far of what is possible with today's technologies that disruption is needed at many levels.  As one example, we support the idea of crowd-sourcing app development for PHR systems.  For example, when many patients have managed to get their health data out of a particular type of EMR but still cannot integrate that raw data with other parts of their PHR then an engaged (or entrepreneurial) software developer could decide to write an app for data conversion/consolidation.  In this scenario, MyPHRMachines's trust features become essential: with MyPHRMachines, patients have the guarantee that the app developer does not get access to their data.  

 

 As another example, consider a patient who has a rare disease and decides together with his/her caregiver that a particular genomic analysis is meaningful.  Now, it is not always the case that the best pharmacogenomics service provider is also trustworthy w.r.t. data handling practices.  The service provider may or may not be subject to HIPAA regulations and may or may not comply to such regulations today or in 10+ years from now.  With MyPHRMachines, this vendor has to deploy the service to a trusted broker platform.  This platform can then guarantee that the vendor does not abuse the data.  In summary, vendors that claim not to abuse patient data can now prove this by offering their services on  MyPHRMachines. Patients (and/or their guardians/physician) can simply trust the base infrastructure and do not have to worry about trustability claims of individual service providers.

 

We are very well aware that physicians are subject to very strict privacy regulations and we are convinced that it is not realistic that they submit patient data to arbitrary web services (i.e., web services outside of trusted platforms such as MyPHRMachines).  By aiming at an EU-approved trusted platform, physicians will be relieved from privacy considerations for individual services.  

 

In summary, the MyPHRMachines initiative aims at empowering physicians too (giving them access to more data, and to more services), not at working against them.