At a recent trial event for our Democs kit, some people were questioning why we would want to let people add their own information to their patient record. Patients, they suggested, couldn’t be trusted to add accurate, useful data. Patient-provided information would be more likely to confuse than illuminate.

At the time, I was more hopeful, but I couldn’t put my finger on why. This story about an American political scandal that involved from personal record keeping obsessives Gary Wolf and Kevin Kelly might have part of the answer:

The CIA claimed that [Senior Democratic Politician Nancy] Pelosi had been briefed in detail about torture, and didn’t make any objection until long afterward. Therefore, if there is to be any kind of sanction for torture, it should hit the top Democrat who approved it as well as members of the Republican administration who ordered it. Pelosi, though, denies having been briefed about the torture.

Well, it turns out that Bob Graham [a Democratic Senator who was famous for keeping comprehensive notes on his daily life in spiral bound notebooks] was also supposed to have been briefed on these topics, and the CIA forwarded to him the dates of the meetings he supposedly attended. But the CIA records were inaccurate, according to his own personal records. Such was the respect for Graham’s notebooks, that this line of attack was closed within 48 hours.

This is interesting for several reasons. First, it’s worth noting that one man’s spiral bound notebooks were able to accumulate enough credibility to defeat the records of an organization whose very reason for existence is to collect information, communicate it to trusted members of government, and keep records of these communications. Anybody who has been following some of the controversy about patient records can add this strange example to their list of favorite anecdotes. Personal data, kept by a dedicated and interested party, even using yesterday’s technology, will trump large scale collection systems managed by bureaucrats.

In other words, Wolf and Kelly are arguing that what patients lack in technical knowledge, they make up for in commitment – it’s their record so they will take responsibility for making sure it’s right.

Hat tip: Boing boing