I posted some thoughts recently about an article on impact of privacy on patient record sharing.
Now, here is an article that discusses the merits of giving the patient control over how they are identified and how their records should be shared.
Fundamental to this are the two approaches:
- A formal managed infrastructure that provides (cross-)identification and record transport services (like eHealth Exchange, formerly NwHIN), or;
- An ad hoc one that allows participants to send record information from point-to-point (ala the DIRECT or Blue Button Plus projects).
- As I discussed with a respected colleague of mine at the recent ACR Informatics Summit, I believe that new standards like the emerging DICOMweb (aka QIDO-RS, WADO-RS, STOW-RS) and HL7 FHIR will more easily enable ad hoc exchange of records, but the role of more formal application infrastructures, like those defined by IHE XDS (and its domain specific variants, like XDS-I) will still be used where a mandate for managed patient records across a consortium exists (such as in Canada with the Canada Health Infoway).
- As I mentioned in my prior post, society may have different motivations than those paying for the infrastructure and tools. This article attempts to express some of the concerns consumers may have about how their data is handled, which contrasts with the prior article’s statements about how “nobody under 30 cares about privacy”.