At last Wednesday’s ASC cataloguing forum, we discussed one of the most common challenges Archivists face: what items do we need to restrict access to?
When we catalogue a collection, we’re effectively converting what might have once been private records into publicly accessible ones. As cataloguers we are bound by the Data Protection Act (1998), which controls what personal information we are allowed to make public regarding identifiable living people. For many items this isn’t a problem, but if the records contain sensitive personal information then it’s a different story. As Archivists, we have both a legal and an ethical responsibility to ensure that the information we make publicly available can’t be used in a way which could cause distress or harm to individuals.
Our discussion was led by Laura Stevens of the University of Glasgow Digitisation Centre. Laura, who is presently project managing the digitisation of the records of Gartnavel Royal Hospital (Glasgow) and the Crichton Royal Hospital (Dumfries) as part of the Wellcome Trust funded project Digitisation of Mental Healthcare Archives. This ambitious project aims to digitise roughly 800,000 pages of mental healthcare records, which will be made freely available via the Wellcome Digital Library.
These records are immensely valuable: they provide rich insights into patients’ lives, as well as revealing how our understanding of mental illness has changed over the past two centuries. Digitisation opens the records up for researchers across the world to make new discoveries. However, patients’ mental health records are extremely sensitive and should not be made public whilst the individuals concerned are still living. For this reason, only patient records up to 1913 are being digitised as part of the project.
The remaining records should in theory be fine, but sensitive patient information has a way of working its way in to other records. It might have been a hurried doctor scribbling notes on a patient on a copy of the minutes of last week’s meeting that just happens to have been the closest piece of paper to hand. A letter might have five pages of discussion about ordering new bedpans, but could casually mention a patient’s condition in just one sentence. The example of a child’s doodles below show how pretty much anything can sneak into the records! Once all this has also been checked for, the archives has fulfilled its legal duty to the patients in these records.
However, dealing with digitised material brings up extra ethical issues. The legal requirements for Data Protection do not cover published information, but things like staff magazines were clearly intended to be seen only by a very specific audience. Everything that’s digitised is suddenly available to anyone with an internet connection – so a once harmless in-joke amongst staff members could be interpreted and spread as a serious and defamatory statement.
As well as fulfilling the legal Data Protection requirements, the Wellcome Trust are also using the concept of “data sensitivity” as an added layer of precaution. “Data sensitivity” essentially means using knowledge of a collection along with a dash of common sense to decide if a person might reasonably object to the information about them being available, bearing in mind that people can approach digitised information from any perspective. It gives archivists more control over how information is used, and we still have the option to make the physical copies available in the reading room, where we can supervise their use.
So digitising records containing sensitive data can be time-consuming, and we have to be wary that it’s not mis-used. However, it’s a price worth paying to make our collections much more accessible. And in the process, having to come up with answers to all these ethical questions encourages us to continue to be vigilant in our approach to handling sensitive personal information.
Find Out More
All images used in this post are courtesy of NHS Greater Glasgow and Clyde Archives, in association with Glasgow University Archive Services. They are freely accessible on the Wellcome Library’s website.
The Wellcome Library’s Copyright Clearance and Takedown Policy sets out their data sensitivity criteria in greater detail. Rada Vlatkovic has also written a Wellcome Library blog discussing the challenges of digitising sensitive material.
The archives of Gartnavel Royal Hospital (and several other Glasgow asylums) are held at the NHS Greater Glasgow & Clyde Archives. The records are available to members of the public on Wednesday to Friday in the Mitchell Library; see their website for further details.
Categories: Archives and Special Collections