PHRs: tethered and untethered at HIMSS in chilly San Francisco

If  Mark Twain quipped “The coldest winter I ever spent was a summer in San Francisco”, then he was definitely not around this December week.

But attendees were very warmly welcomed by Microsoft with quite a delicious repast served up before the Northern California Chapter of HIMSS met to discuss Personal Health Records. Robert Half International, Axolotl and a few other vendors were on hand to greet us as we started the meeting. A short recap:

1. The Microsoft presentation showcased NewYork Presbyterian hospital (NYP) as an example  deployment of the Microsoft Amalga HIS. Amalga integrates various components of a hospital system and of course HealthVault.   The presentation described several steps which I will summarize as follows:

  • Continous Care Records (CCRs) are exported from the NewYork Presbyterian system, on Amalga, to HealthVault. How can the patient be sure the data was not modified/compromised en-route? Firstly the CCRs are digitally signed and secondly there is an uneditable audit trail in HealthVault.  The final point is central to me, because my basic issue with patient entered data in PHRs is “what is stop a patient modifying data or deliberately or unintentionally altering their health record?”
  • Does the patient own their health data? In the above example, the patient grants NYP consent to send the CCR to their HealthVault record. The HealthVault patient ID is linked to the NYP Enterprise Master Patient Index (EMPI)
  • HealthVault acts as a transport layer of loosely coupled applications.  Kryptiq polls Amalga and imports new CCRs  into the patient’s HealthVault account.

Bottom line: integration in healthcare environments is difficult, Amalga, HealthVault and Kryptiq attempt to simplify the process.

2. We also were privileged to hear from epatientdave (his blog) .  After a moving story of his successful fight against kidney cancer, Dave described participatory medicine. In essence the patient and physician co-operate in the healthcare of the patient. Patients are empowered s they areeducated on their conditions and treatments by reading websites and interacting in peer support groups online. The patient thus makes an informed visit to their physician discussing the various treatment options. Key to this process is, patient access to their data: your healthrecord, your PHR. Without access to their own patient, the patient cannot engage the broader community to discuss diagnoses and treatments.  It is a difficult question, who owns the data the patient, the physician/medical institution or even perhaps the insurance company? Dave referred us to the Journal of Participatory Medicine and the Society of Participatory Medicine (a project of e-patients.net) and a book  “The Innovator’s Prescription.”  Oh, for a fascinating view of the human body in colour and detailed video, view this.

3. Dr Albert Chan presented the PHR of the Palo Alto Medical Foundation (PAMF) As I am patient at PAMF I was able to gloss over this presentation, suffice to say the patient portal provides an excellent way for patients to view their Electronic Medical Record maintained by the PAMF. Patients can also make appointments online, pay bills, view test results and email their physician.

I got in the final question, humorously tagged “inflammatory” by one of the panelists,  at the end of the  discussion: “If a patient is allowed to enter data into their PHR, what is to stop a patient from modifying or entering incorrect data (for example a patient could remove diabetes from the their healthrecord)? ” This is a hot topic because medical institutions can use this scenario to provide patients with read-only/view-only access to their PHR. This question is partly answered above “provide an uneditable audit trail of who entered/modified data in a patient’s record”, but is an ongoing discussion.  I also took home the last raffle prize, a 2006 Kathryn Hall Cabernet Sauvignon, which a few attendees tried unsuccessfully to persuade me that it is plonk and “leave it behind”. Sorry fellow HIMSS members, it is in my rack at home awaiting a festive occasion.

Courtesy of Vince Kuraitis I offer this view of a PHR

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One thought on “PHRs: tethered and untethered at HIMSS in chilly San Francisco

  1. Pingback: Should Doctors answer email (from patients) ? « The HealthITBlog

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