Workshop on wearable medical device data
23 July 2018, 09.30-16.00
Great Hall, King’s College London
The Health Archives and Records Group is hosting a free, day-long workshop on data collected by wearable medical devices. These range from simple blood pressure monitoring devices used by keep-fit enthusiasts to clinical equipment used in the more complex care of patients with chronic, difficult to manage conditions such as Type 1 diabetes and lung disease. This is a rapidly evolving technology with major sensitivity concerns, and so records managers and archivists with responsibility for health related data in the NHS, private health care, pharmaceuticals, university and other sectors may find this workshop particularly useful.
The day will include quick-fire talks from device manufacturers and service providers, records managers, researchers, policy advisors and others, and will cover the creation and management of data, ethical and legal concerns, storage, digital preservation and re-use of data for research or other purposes. There will also be practical sessions, discussion and debate around current issues, likely future developments and next steps for the implementation of appropriate and sustainable standards and protocols around this data.
Confirmed speakers to date:
Dr Natalie Banner (‘Understanding Patient Data’ project, Wellcome Trust)
Professor Patricia Grocott (Professor of Nursing Technology and Innovation, King’s College London)
Dr Martyn Harris (Institute of Coding, Birkbeck University)
Tim Kendall (UK Caldicott Guardian Council and Chair of the London Caldicott Guardian Network)
Dr Rebecca Lynch (Research Fellow (Medical Anthropology), London School of Hygiene and Tropic Medicine)
Russell Joyce (Health Sciences Records and Archives Association)
Chris Robson (Entrepreneur and CEO of ‘Living With…’ condition management platform)
Full programme and further details to follow.
If you are interested in booking one of the remaining places at the event, please contact Clare Button at Clare.Button@ed.ac.uk
Louise King: Archivist, The Royal College of Surgeons of England
In June 2017 the archives of the Royal College of Surgeons of England (the College/ RCS) moved to the London Metropolitan Archives (LMA)…well, most of them did…and they haven’t moved forever…it’s a long story but I will try to keep it brief!
In May 2015, I attended my first meeting to discuss how we would move the archive collections out of the building, where to, for how long, and how we would prepare them for this upheaval. Over the next two years I attended a lot of meetings, counted a lot of things relating to archives and was grateful to a lot of very hardworking individuals. Don’t get me wrong, the work on the archives didn’t suddenly start that day in 2015, it had been going on since the start of the century when the College appointed its first professional archivist, but the prospect of a move makes you think about things differently.
As well as the archives, the library and the museums needed to move the majority of their collections out too, but my focus was the archives. The reason for the move was that, by 2015, the College was made up of parts that had mostly gone up since the 1950s (the only 19th century parts were the portico, the Library and the entrance hall) and was no longer fit for the College’s activities and staff in the 21st century.
Preparation:
Our small team already carried out the processing, including basic repackaging when required, and promotion of the archives. Our archive collections (a mix of the College’s own papers and those relating to the history of surgery) were housed in a number of rooms in the basement (of course!) of the College. They weren’t perfect but they were adequate. With the prospect of the College being largely knocked down and rebuilt, and relying on other people to work with our collections, we now had to look at the collections and what we did with a different eye. We had to consider questions such as: are the collections packaged well enough to protect them during journeys in a van and are the box labels correct and clear if you aren’t familiar with our collections? Every archive has labels that have been amended but not printed off again, yet, but when other people will be handling the boxes for you, suddenly these potentially confusing labels appeared to be on every other box!
Conservator Kostas Tsafaridis showing the Archives team how to make phase boxes
In May 2015 we were a team of just 1.5 people (with occasional volunteers) but to prepare for the move we took on someone to backfill the daily tasks for me and a cataloguer. The meetings I attended were largely to discuss the logistics not only of our own move, but to ensure that we didn’t clash with the library or museums as well as the rest of College. We also had to make the arrangements for the off-site storage with our new partners.
We decided that using barcodes on the archive boxes would be beneficial both during the move and for tracking future movements. Tablets and scanners were bought, each pair of barcodes were put on a short and a long side of each box. We then scanned the barcodes into an Excel spreadsheet because we were unable to scan straight into Adlib.
Harrow Green unloading the first cages of archive boxes at LMA
We used Harrow Green for the moves of the archives and of the library. For the archives we just used them on moving days but the library also used them to help with packing up the books (wrapping in tissue, moving to temporary locations). We all agreed how fantastic the team working on our project were!
The Move:
The moving days were possibly the easiest part of the whole project. Most of the archives were moved during one warm week in June. Three days were spent shuttling between the College (near Holborn) and the LMA (Clerkenwell) and one day going out to TNA at Kew. Archives staff were at each end to oversee the Harrow Green staff loading boxes into cages, onto and then off the vans before going onto their new shelves.
Archivists Sophie Gibbs and Fahema Begum with trollies ready to relocate
They felt like long days! Harrow Green like to start early, to get as many van loads done as they safely can in a day, so we took it in turns to be in early and rotated the other posts.
The shelves at LMA were already barcoded and we have put barcodes on the shelves we are using at TNA, so once boxes were unloaded, the barcode on their new shelf was scanned into the spreadsheet.
Post-move:
You’d think that the rest of the summer would have been quiet and an anti-climax. I was now an archivist separated from the bulk of her archives (without the means to provide access) and the rest of the College was gradually being packed up. But that meant that people started finding “things” for the archives so we had to start a new series of “uncatalogued” boxes (which we then moved along with the office contents in September). We also needed that time to input the new locations into the catalogue. All too soon, we were moving out of our office at the College, the Library was no longer “ours” as the whole building was handed over to the contractors, and we moved our last boxes over to LMA.
The Library just before it was handed over to the contractors in September 2017
The last of the (archives, library and museums) project staff left in August. The Archives team is back to 1.5 people working in both Holborn and at LMA.. The current situation takes a lot of explaining to some people but our researchers are gradually venturing to Clerkenwell where LMA staff retrieve the boxes and invigilate the Archives Study Area. The arrangements all seem to be working well so far.
The Future:
The architects are hard at work on the plans. Knowing that we will only have a fraction of the on-site storage that we used to, we are making plans for long-term off-site storage and retrievals. While the Library and the front of the College won’t be changing much, their use will be. This means that we are now planning a search room from scratch. It will be smaller (we used to have the whole Library) but will be easier to invigilate and provide services for researchers. The College is due to re-open in 2020.
If anyone reading this is planning a move, particularly of cross-domain collections, do get in contact as we would be happy to share our experiences and lessons learned.
Victoria Haddock, Wellcome Project Conservator, Boots Archive
The professional seminar ‘Approaches to Opening Up Medical Archives’ hosted at London Metropolitan Archives on 19 January 2018 was an insightful collection of talks around the project management and conservation of two important collections: the Foundling Hospital medical records at LMA and those of the St. Mark’s Hospital Archives held by St. Bartholomew’s Archive. Both projects have received funding from the Wellcome Trust Resource Resources awards to enable their conservation and cataloguing, with the aim of opening up access to these collections – whether by allowing them to be a in a more stable condition to be viewed, or to be digitised.
The Foundling Hospital project at LMA focused on a distinct subset of the Foundling collection which was unfit for consultation and required much-needed treatment to enable it to be digitised safely. In addition to this the LMA was successful in its application for a public engagement fund which will allow a year-long programme of events to link in with the project including an academic conference, events for schools and an exhibition.
The St. Marks collection is over 50 linear metres of archival items which all require full cataloguing, which will begin in February 2018. Their conservation has been worked on since July 2017 by their project conservator, who gave an insightful talk on her approach to working on such a large collection. The usefulness of having the time to thoughtfully and accurately survey a collection was detailed along with an interesting example of the development of stationery bindings from the mid-nineteenth century.
Both were great examples of the variety of challenges that may happen during these kinds of projects and we all got the chance to see some fantastic examples of the conservation work done by the conservators on these projects, from full rebinding examples to more minimal preventive approaches such as bespoke book jackets.
It was a great morning to hear about these projects and sparked many questions and debates. It was also a really great opportunity to meet others in similar situations who have the same sort of issues to confront within medical archives.
The timing of this event was also fortuitous as recently a group has been set up in the hope to connect previous and current conservators and archivists that have worked on short-term projects funded by the Wellcome. Since beginning work on a rehousing project at the Boots archive, Nottingham, in January 2017, I was struck by how many projects similar to mine had been funded by the Wellcome Trust. But there was nothing out there to tell us where we all were and no central body linking us together, even though we were all linked by the Wellcome’s funding and the fact that we are all medical, pharmaceutical or scientifically based archives. This struck me as a wasted opportunity for collaboration as many of us may have been facing the same kinds of challenges and there might have been someone else who has found the answer already and may be able to share this experience.
Personally, as an emerging conservator who has only recently graduated, I was struggling with the context of the project I was working on being the only conservator – and the first and only conservator the archive had ever had – and so was faced with a lot of responsibilities and decisions to make without having that opportunity to consult with a team of conservators with greater experience than me, that others might have in a different institution. But I also discovered mine was not an unusual case at all, there being many conservators out there with short-term project based work being one of their first ‘proper’ jobs after graduating from a postgraduate qualification or similar.
So this led me to begin drawing together a network of conservators, archivists and others, who were currently or had previously worked on projects such as mine. It has been initially a closed group on Facebook and an emailing list. After the event in the morning those of us that wanted to meet up to discuss the group were able to do so by the kind offer of a meeting space at LMA.
Many topics were discussed such as what we want to do with the group, how best to do this, what kind of information do we want to share such as project reports, as well as shorter blogs or images to show what we are working on, and are there any skills or training we would like to get that would benefit us a group and our particular situations. To be honest we only just touched the tip of the iceberg!
Many more thought-provoking topics were raised such as the general nature of project work from both the perspectives of those working on projects and those hiring for and managing those projects, how case studies and reports about Wellcome funded projects are not made available for those thinking of applying for funding, or those currently in that process to give applicants a greater understanding of the nature and scale of what conservation projects might become, and also how archivists and conservators could and should be working together in partnership.
This is just the beginning of what I hope to be a really useful network for people working on short term projects that want to have a place to voice their questions, successes and feel part of a wider supportive community.
If you have any questions about the group or would like to join the mailing list please email victoria.haddock@boots.co.uk.
