We are working with the MOH of Indonesia under CHISU and the problem we are facing is how new-borns are dealt with. Most new-borns spend the first few weeks of their lives without a permanent name assigned to them yet, as well as not receiving a national ID until the parents get them registered.
My question is, what have other countries done to help keep track of these babies and their medical information with the lack of personal identifiers? Especially in the edge case of twins when it comes to differentiating between the two of then.
Bruce - this is a challenging problem for everyone! The general answer is to use any and all identifiers available. In the U.S., until the newborn is assign an SSN (and this time period can vary, though it is occurring earlier and earlier), health systems capture a variety of features to identify the patient. Those fields can include ‘next of kin’ (parents) information, physician/provider information. HL7 also includes field for birth order in the case of twins, and this birth order field can be used in subsequent visits.
Practically speaking, the healthcare organization assigned a unique local medical record number (MRN), that ideally is used for each subsequent visit at that given facility (this is not always the case because often the newborn cannot be identified using the limited demographic information, and so a new duplicate MNRN is assigned). Ideally, shortly after birth, a national ID is assigned (in the US, a SSN), and moving forward, the SSN plus other demographics are used.
We build custom matching algorithms to retrospectively link the fragmented record for newborns using the following fields:
SSN, MRN, surname, given name, sex, DOB, address (street, city, state, Postal code), telephone number (of family), provide name.
I have worked on this before, the solution we ended up implementing is tracking the birth event with a unique number (we called it CUN in Spanish), the event record contains all the data related to the infant and also the mother (and father if available). This number is then recorded on the paperwork given to the parents when they leave the health faciltiy.
The number and all the associated data is available to the Civil Registry systems, so that when parents show up to obtain a legal ID for the infant they can locate the birth event and update the record (including the child’s name), which in turn is synced with the MoH original records. There are still some challenge with single mothers who are themselves minors and do no have a legal identity.
In general, this has been very useful because, even is parents fail to legally register the infant, the MoH can trace their vaccines and clinic visits using the CUN. Context, my be different in other countries.
It is good to know that we are mostly on the right track with the use of a temporary ID generated from a few identifiers for the newborn, along with the inclusion of any information like the mother’s ID number.