In session on Personal Health Records, the question was posed why we should need Personal Health Records. Generally, the trend seems to be that the most important issue of having a personal health record of some sort is that it provides control over your own health related information. However, big questions are concerning integrity, access, and availability of the data.
One suggestion was to just carry your own personal health information around using a USB stick or other portable device. That would provide a backup that will also be available when internet and or power fails or is not available. One difficult issue here is the limited storage capacity of such a device while the amount of data could run into the tens of gigabytes when multiple CT or MR examinations have to be stored onto it.
Furthermore, because the data on the device should be encrypted a password might be required which could be difficult to provide by the victim in an emergency case. Therefore, besides the device, one should somehow (on the device or in a cellphone entry) a ICE (In Case of Emergency) telephone number.
The nation wide patient information system was recently terminated by the government in the Netherlands, therefore initiatives are now arising to go from topdown to bottumup, so start with the patient.
A complication here is that the personal health record is intend for and maintained by the patient, but the information is delivered to the patient by healthcare providers, mainly used by the same or other health care providers, and the information is in most cases incomprehensible for patients. Therefore there should be fixed rules about logging, monitoring and maintainig the health information in a patient driven personal healthrecord to allow the patient to become in control of his/her own health record. When this issue is not considered, the information on the personal healthrecord could easily become corrupted.
A complication here is that the personal health record is intend for and maintained by the patient, but the information is delivered to the patient by healthcare providers, mainly used by the same or other health care providers, and the information is in most cases incomprehensible for patients. Therefore there should be fixed rules about logging, monitoring and maintainig the health information in a patient driven personal healthrecord to allow the patient to become in control of his/her own health record. When this issue is not considered, the information on the personal healthrecord could easily become corrupted.
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