Nicole Junkermann on Data People Can Actually Trust

People are often described as reluctant to share information about their health. In practice they share a great deal, very readily, when they can see where it goes.

Trust belongs to the arrangement

It is tempting to talk about trustworthy data as though trustworthiness were a property of the numbers. It is not. The same information can be entirely reasonable to share in one arrangement and entirely unreasonable in another, and the thing that changes is not the data. What changes is who can see it, what they may do with it, and whether any of that can be found out without effort. Nicole Junkermann thinks the habit of asking about the arrangement rather than the dataset clears up most of the confusion in one move.

Three plain questions

The useful questions are not technical, and anybody is entitled to ask them. Who can see this. What may they do with it. How would I find out if that changed. A service that can answer all three in a sentence each has usually thought carefully about the answers. A service that cannot has usually not, whatever the policy page says.

The third question is the one most often skipped, and it is the one that does the most work. Arrangements change: ownership changes, purposes widen, a small convenience becomes a large one. An arrangement that tells people when that happens is in a different category from one that quietly relies on nobody checking.

What good practice looks like from outside

From the outside, careful handling tends to look like restraint. Less is collected than could be. What is collected is described in words an ordinary person would use. Leaving is as easy as arriving, and taking a copy on the way out is not an ordeal. None of that is visible in a demonstration and all of it is visible to anyone who looks for a week.

The quiet value of boring answers

One more sign is worth noticing, because it runs against instinct. The arrangements that turn out to be solid are usually the ones that are dull to read about. They say what they do in flat sentences, they do not promise more than the ordinary, and they decline to describe themselves as a revolution in anything. Enthusiasm is not evidence of carelessness, but a document written to impress is generally written for a different audience than the person it concerns, and that is worth noticing before deciding anything.

Why it matters for the field

Information about a person's health is information about their life, which is why the ordinary rules of courtesy apply with extra force here rather than less. Nicole Junkermann makes no claim about any particular service and gives no guidance about any particular decision. The general observation is simply that a field which treats consent as a conversation rather than as a formality tends to be told more, and a field that is told more has more to work with.

The glossary keeps these terms brief and free of ceremony, the design notes look at how the same ideas appear in an interface, and the earlier note on care, data and trust opened this ground at the start of the month. There is more from Nicole Junkermann across the notebook.

← Back to the blog