Delayed and Embargoed Results on PatientSite

Today I was asked about the way we display results in our personal health records and the way we transmit results to personal health record services like Google Health and Microsoft Healthvault.

In general we share everything with the patient immediately, since it is the patient's data.

However, from our 7 years of supporting personal health records through Patientsite, we've learned that some news is best communicated in person between doctor and patient i.e. do you want to find out you have cancer on the web or via a thoughtful discussion with your doctor?

Here are the reports we delay to enable discussion between doctor and patient to occur first. In the case of HIV testing, since special consents are required, we do not show the results in Patientsite at all.

CT Scans (used to stage cancer) 4 days
PET Scans (used to stage cancer) 4 days
Cytology results (used to diagnose cancer) 2 weeks
Pathology reports (used to diagnose cancer) 2 weeks

HIV DIAGNOSTIC TESTS: Never shown
• Bone Marrow Transplant screen, including
HIV-1, HIV,2 Antibody
HTLV-I, HTLV-II Antibody’
NHIV (Nucleic Acid Amplification to HIV-I
• HIV-1 DNA PCR, Qualitative
• HIV-2, Western Blot. Includes these results:
HIV-2 AB, EIA
HIV-2, Western Blot
• HIV-1 Antibody Confirmation. Includes these results:
Western Blot
Anti-P24
Anti-GP41
Anti-GP120/160

I hope these rules help others who are implementing personal health records. We want the patient to own and be the steward of their own data, but we also want to support the patient/doctor relationship and the notion that bad news is best communicated in person.