Whose data is it anyway?

The question of who data belongs to, and whether individuals can have a say in what happens to their data, tends to come up very quickly in some areas. Health, for example.

But there is a concern that the whole issue of data collection and use could become much more fraught with the arrival of the General Data Protection Regulation. This is an EU regulation, that is being incorporated into UK law at the moment, via the Data Protection Bill.

 

The GDPR will require organisations to think about the impact of projects on data privacy at an early stage and to appoint a data protection officer. It will introduce large fines for data breaches, tighten up rules on consent, and introduce some new rights; including a right to be forgotten.

The session heard this last right, introduced following a court case involving Google, could have a big impact on open data sets. Because if people remove themselves from datasets, they become less complete.

As the session leader, Kim Moylan, said: “What happens if people pluck themselves out of data? Do we leave a blank line, or just take what is there?”

“You will have to remove information that is no longer relevant. But what is no longer relevant in a medical record? What about the census? That is a big open data set, if people remove themselves from the census, then what do we do then?”

Aggregate data

One participant felt the public debate needed to be recast. Instead of talking about ownership, he said, the discussion should be about legal rights and restrictions. “If I walk through Belfast, I know will be filmed, but are legal safeguards on that. Talking about ownership just confuses the issue.”

However, the GDPR is coming in. And the general feeling in the session was that if it is going to cause problems for the open data movement, they will arise at the aggregation stage.

As various participants pointed out, when data is released as open data it is anonymised; the open data movement doesn’t deal in identifiable patient data, so it doesn’t need explicit consent to use the data it uses.

However, if people decide to opt-out of a particular data collection, or ask to be ‘forgotten’ and removed from a collection that has taken place, then that will affect the size, and potentially quality, of the dataset being released.

In which case, the big question is how many people will opt out or exercise their right to be forgotten. On this, opinions were divided. One participant pointed out that people already have rights to opt out of their medical data being used in shared care records and some data collections; and hardly any use it.

The Caldicott Review of information governance and security in the NHS will give people new opt-out rights; but there is no reason to think a lot of people will use them.

Practical problems

Still, the practical implications could be hard to deal with. One participant, who uses surveys to collect information asked whether someone who came back and said they no longer wanted their data to be included could ask for it to be removed at every level; the original survey, the aggregation, and the anonymised release.

The answer seems to be yes. “But philosophically, I have a real problem with this, because a policy decision might have been made on that data, and now it has changed.”

Also, surveys might need to be larger in the future, to make sure they would still be statistically valid if a predictable number of people removed their data later on.

Overall, though, the session was positive. It remains the case that most instances in which data is generated and used are covered by well-established legislation that will not be affected by the GDPR.

The Data Protection Bill builds on existing data protection legislation, which is reasonably well understood. Even the right to be forgotten is already two years old.

GDPR – good news?

Indeed, there is an argument that more debate about data protection, and more awareness of the new rules, can only be a good thing, because it will build public trust.

One participant said: “These conversations are happening more and more. We have privacy groups bringing cases. Privacy notices will have to be much more transparent. But I’m quite optimistic. I think once people understand their rights they will actually be more comfortable with uses of their data. The impact will be on companies that are not doing very well at the moment.”

 

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