An annotated bibliography of works describing the nature of and influences on the medical record.

Kay & Purves (1996) "Medical records and other stories: a narratological framework" Meth Inform Med. 5:72-87

Berg & Goorman (1999) "The contextual nature of medical information" Int J Med Informatics 56: 51-60

Great overview of some of the challenges that arise when medical data captured for one reason (billing, communication, etc) is used for another.

Notes: Attention has been paid to the secondary utilization of data basically because of privacy issues and the accountability of healthcare professionals. Little attention has been paid to another crucial issue: IS the secondary utilization of healthcare data possible and what does it take to make it possible?

Current viewpoint: it becomes feasible as soon as the IT connections are in place. In such a view the medical information is conceptualized as givens about a patient that are collected and then stored in a record. Info is a commodity. Substance that is transferable and independent of its vehicle. Autonomous, atom-like building blocks which can be stored in a neutral medium. [Agre ]

His primary point is that this is a wrong viewpoint. “Information should be conceptualized to be always entangled with the context of its production.” 52

Disentangling is possible, but entails work. Not sure that it is always possible. The information useful to the researchers needs to match up with the priorities of the clinician. He then takes it onto the practical level of who does this disentangling and who benefits?

3 ways in which information is entangled with the context of its production (and why atomic view doesn’t fly: 1) Data are always produced with a given purpose and their hardness and specificity is directly tailored to that purpose [Berg 1997]

Gives the example of apparently incomplete data from a case study / antecdote. In this case, if medical information is seen as a series of context free givens, then the clinical conclusion of Agnes’ record is that there was an incomplete examination conducted.

With a context of caring for patients one can expect such omissions as brevity is a essential part of managing clinical workload [Garfinkel 1967, Harper 1997]

2) Atomical view of information overlooks how med data mutually elaborates each other [Whalen 1993]

Medical data shouldn’t be viewed as a heap of facts as much as bits and pieces of an emerging story [Hunter 1991].

The addition or exclusion of some value often gains its meaning from previous (or next) values. The data, like the patient is a system. Ex. Omission of the data item “murmurs: none” changes significantly if the entry after remarks read “now 3 days after valvular surgery.” In this case we would expect no murmurs to be the result of a meticulous investigation rather than a cursory glance in the case of a patient in for a broken leg.

Temporal dimension is as crucial to medical information as it is to a story [Hunter 1991, Kay 1996]. In the course of a patient’s trajectory data items are constantly reinterpreted and reconstructed [Strauss 1985]. Medical work is characterized in many wards as ongoing (re)interpretation of the tendencies in graphs and tables. Great example of how this affects form and structure – galya’s work in building a tumor bayes net. 3) ‘physicians [and other health workers] typically assess the adequacy of medical information on the basis of the perceived credibility of the source’ [Cicourel 1990]

Exclusions from a more senior person may be looked upon differently than exclusions by a rookie [forgive and remember]

Physicians judge the quality fo the output by machines as well. They develop a sense of trustworthiness of the apparatuses they work with [Barley 1988] and they learn to trust the labs and x-rays produced by their departments

Separating context – law of med info Work is required to make data suitable for accumulation.

“law of medical information: the more active the accumulation the more work needs to be done. “

I like the definition from the abstract better: “the further information has to be able to circulate (i.e., the more diverse contexts it has to be usable in), the more work is required to disentangle the information from the context of its production.”

His next point is who is to do this work? Often it is not the doctors, nurses that benefit.

Many authors have expressed the hope that information will be “freed” from it’s current inaccessible paper format. The idea that information is something that can travel freely, independent of its medium is problematic. Even the highly standardized laboratory data that figure in every hospital record cannot be read without knowledge of that particular hospital’s normal values.

Disentanglement from primary context is possible. The translation to other contexts requires work. ]