In this week’s blog, Archivist Louise goes back to class….
Archivists come in all shapes and sizes (literally and metaphorically!) and from a variety of different backgrounds, but those working in professional posts during the last few years have one thing in common: a vocational qualification in record-keeping from one of seven recognised institutions in the UK and Ireland. One of these qualifications is based at the Humanities Advanced Technologies and Information Institute (HATII) at the University of Glasgow, and it’s where three of the four archivists in LHSA trained.
Therefore, when tutor Victoria Stobo asked Project Cataloguing Archivist Becky and I to speak to her students about the way in which we deal with confidential data in our everyday work, we were delighted, although we knew that (as ex-students) it would feel a little strange to be speaking from the other side of the classroom! Our role as archivists is all about access, but we need to give that access whilst protecting those people around whom the archive is built, and both our talks reflected how we do that in our different fields of work.
As archivist, most of my work with confidential data is around user services – helping our enquirers with questions about records closed to general public access. By ‘confidential data’, I mean material that is covered by either legislation that covers information about living individuals (i.e. the Data Protection Act) or NHS guidance that protects the patient and staff records of those now deceased. Since we are one of the largest medical archives in the UK, holding over one million patient case notes, I deal with questions about closed archives regularly.
|One of my slides from the talk|
Many people assume that records marked as ‘closed’ are beyond all access, but that is not necessarily the case. You are entitled to access any health information that LHSA may hold about you under the Data Protection Act (1998), for example, as long as you can prove your identity. We can also apply to the owners of our records, NHS Lothian, for enquirers to see closed records about other people if they can prove that they have a legitimate reason for wanting to see them, along with proof that the record subject has given consent if s/he is living, or that the enquirer can prove the record subject is deceased.
In our experience, people want to look at confidential material for two main reasons – either as researchers going through a large number of records, for whom the identity of individuals is not their main interest, and genealogists or other interested family members for whom identity of a person is central. We treat access to otherwise closed records very seriously, and I explained to the students that applying to see a closed record is far from a ‘rubber stamp’, but a considered process. I also went through the measures that we take to keep confidential information secure if an enquirer (such as an academic researcher in the reading room) is allowed to see a closed record.
When I first started my role as archivist, dealing with access to closed records was intimidating to say the least, but (as I explained to the students) working with legislation about access to records is an essential part of my role and soon became a lot less terrifying and a lot more intriguing! One of my favourite things about my research with closed records is that I work with people much closer to the record subject (even the record subject themselves) – this compression of time is a sharp reminder of the fact that names recorded in our archive are not just entries in registers but individuals with their own histories that led them here.
Becky’s role at LHSA is also about access to closed records, but in terms of the description of those records. As you know from last week’s blog, Becky is cataloguing tuberculosis case notes in order to give researchers an intellectual way in to these mostly-closed records. Becky catalogues using eXtensible Mark-up Language (XML) in order that she can both highlight key elements of cases for search and hide parts of the description in a public, online catalogue so that the identities of patients stay private. As Becky explained, her project (in common with Aline’s work on Norman Dott’s neurosurgical case notes) is designed to give researchers a guide to what these under-used records convey in order to realise their potential as academic (and genealogical and clinical) resources.
Becky explained to the students how she thinks of confidentiality in terms of a jigsaw. There are certain pieces of the puzzle that she must keep hidden inside a public catalogue in order to protect the anonymity of patients (such as a name, for example), but there are others (such as the fact that a person has tuberculosis) that do not in themselves reveal who somebody is. Even some identifying details (such as a home address) can be described in more generalised terms (since geography is fairly crucial to infectious diseases, Becky describes a patient’s origin in terms of electoral districts, for example). However, Becky has to be on her guard, since sometimes an apparently innocuous bit of information (like a precise occupation) can slide the pieces of the jigsaw into place, as neatly demonstrated with these slides:
We got more than a few questions from the aspiring archivists and records managers following our talk – and it was interesting to see what aspects of our work were of most interest to the students. All-in-all, an extremely successful morning – and nice to revisit our former course (although without the assignment deadlines, obviously!).