[topicmapmail] Topic maps in healthcare II

[Carlo Moneti]

Hello,

A little expansion on my interest on topic maps in healthcare:

My current interest in the healthcare field is to devise an electronic 
health record (EHR) for electronic data interchange (EDI) for a national 
healthcare information network (NHIN) that is based on open software, 
open standards, and is patient-centric (i.e., patients control access to 
their health records).

My survey of the state of EHR adoption and recent government initiatives 
(in the USA) to encourage it suggests there are many chattering voices 
but few compelling proposals for an integrated system. Part of the 
problem is that some of the leading voices (big corporations) are pushing 
complexity and their personal interests over something sensible and in 
the public interest.

Here in the USA, there is much talk about data transfer formats, who owns 
the data, who stores it, how is a complete patient record 
discovered/aggregated when patient has multiple doctors, and how will 
access rights be managed. I've identified 2 concepts that may drastically 
reduce the complexity of the problem as it is currently being discussed.

1) For the data transfer (EDI) format, the idea is to use a common 
denominator format that existing (and future) formats can map to or be 
mapped from. Since topic maps define essentially a generic data model, it 
can be the common denominator. It also means that arbitrary fields can be 
added to a record and still be processed correctly.

2) As to ownership, access rights, and aggregation, the idea is to have 
patient-controlled health records (PCHR). In this scenario, patients 
place their complete PHR in one location--a trusted online hosting 
service of their choosing (or host their own)--thus obviating a complex 
infrastructure for locating/aggregating a patient record. Patients own 
their records (obviously); they assign access rights to providers as 
desired (using perhaps an openID based system); and they simply give 
their providers the location of their PHR: a URI.

What's left is to encourage providers (especially physicians) to adopt 
practiceEMR systems so that updates to PCHRs are automated. The main 
resistance to adoption seems to be cost and an unwillingness to change 
traditional workflows. As to cost, a GPL'd practiceEMR solution with 
native TM-based EMR store/view system could do the trick. Such a solution 
would make arbitrary screen displays, data storage, and workflows 
possible, allowing the greatest customization and the greatest ease of 
transition for users.

One more issue is to facilitate access to aggregate PHR data for medical 
research while protecting patient privacy. This is also elegantly 
solvable via a PCHR solution. The PCHR hosting service can provide an, 
e.g., REST service that gives researchers access to all non 
personally-identifying PHR data to query, say, via faceted navigation 
(essentially a parameterized query engine) or to download for further 
analysis. (In fact, the service could also provide a standard precomputed 
statistics page for convenience). With this approach, no third party ever 
has access, even momentarily, to personally-identifiable patient 
information. Nor would there be access rights issues since the data is 
anonymized. In theory, the REST service could be left freely accessible 
to the public.

If anyone has any thoughts on the subject--and especially on the use of 
topic maps as the EDI solution--I would very much appreciate your 
comments.

Thank you,
Carlo Moneti
Syracuse, NY  USA
http://arsteca.net