World Digital Preservation Day 2022

World Digital Preservation Day, organised by Digital Preservation Coalition, is an international event to highlight the importance of digital preservation. This blogpost has been written by St George’s Archivist Juulia Ahvensalmi, Research Data Support Manager Michelle Harricharan, and Records Manager Kirsten Hylan. You can engage with the day and find out more about our work on the Museum and Archives Twitter account using the hashtags #WDPD2022 and #SGULWDPD2022. If you are interested in learning more about digital preservation at St George’s, or would like to get involved, please contact digpres@sgul.ac.uk.

‘Data for All, For Good, Forever’ is the theme of this year’s World Digital Preservation Day, demonstrating how digital preservation allows ‘digits to flourish’. What an apt theme for a university that has been transforming health and medical care since 1733! Whether it is developing the earlier practices of variolation into vaccination (introduced by Edward Jenner in 1798) that eventually eradicated smallpox or transforming health practice though our pioneering work in infection and immunity, population health and molecular and clinical research, for St George’s data has always been for good, for all and, with proper care, forever. This post will consider how by preserving records and data regardless of format that are held in the archives and currently being developed by our staff, we are not only ensuring we maintain our history, but that St George’s continues to contribute to ground-breaking medical research by allowing digits to flourish.

Postmortem Examinations and Case Books

St George’s, University of London (SGUL), is a specialist health and medical sciences university in South-West London. The Archivist, Research Data Support Manager, and Records Manager work together to advocate for digital preservation, winning funds for a digital preservation system, and identifying areas that hold records that require a long-term storage solution. As a medical school we have created many unique datasets that contribute to scientific knowledge and the teaching of medicine.

The Postmortem Examinations and Case Books were created by St George’s, University of London and St George’s Hospital between 1841 – 1946. The records contain case notes including medical histories and pathological findings, and detail social and cultural changes, medical advances, and historical events, including epidemics and the development of anaesthesia and antiseptics. The postmortem books were an integral teaching tool for students of surgery and anatomy at St George’s. Through a project funded by Wellcome, the casebooks were conserved, digitised and catalogued in 2018 – 2021. They now have a life beyond teaching; they are a genealogical, sociological, and historical resource freely accessible online, enabling researchers to broaden their and our knowledge of diseases and treatments that act as building blocks for current and future researchers’ work.

St George’s Post Mortem and Case Book 1846, and a catalogue entry for the case of Thomas Roles, PM/1880/236 displayed on the SGUL Archives catalogue.

The Cambridge Cohort of Open Spina Bifida

Our research data repository holds several valuable research datasets. One such dataset is The Cambridge Cohort of Open Spina Bifida which comprises of 9 reviews of 117 individuals born between 1963 – 1971 with open spina bifida. Spina bifida occurs when a baby’s spine and spinal cord does not develop properly in the womb, causing a gap in the spine (NHS, 2020). Most babies born with spina bifida can have surgery to close the opening in the spine, however, their nervous system will have already been damaged which can lead to a range of health problems. Some may also have learning disabilities.

The Cambridge Cohort of Open Spina Bifida is a unique spina bifida data resource that provides detailed data on the health and quality of life of individuals born with spina bifida. The resource is rare in that it includes a detailed neurological examination at birth, and follows up on participants throughout their lives, with 99% follow-up to the mean age of 50 years. The earlier reviews were conducted at home and school at the mean ages of 4 and 9 years and included clinical examination. Later reviews were based mainly on questionnaires (completed by patients and/or carers) and clinical records. The Office for National Statistics provided information on deaths to August 2017.

The data provide a full, comprehensive picture of the lives of people who received surgery for open spina bifida within 24 hours of birth until either they died (which a third did before the age of 5) or the end of the study in 2017. With a 99% follow-up, it represents a remarkable achievement in research and contribution to an area where not much had previously been known. For each of the participants, and their carers, participation in the research was a means of sharing their experience for good, for all those living with spina bifida – present and future, with the hope of improving understanding and treatment of their disease.

For the researchers, the study was an ongoing endeavour of love, started by a clinician, researcher and mother who passed the work on to her daughter on her retirement. Her daughter painstakingly continued her mother’s work, treasuring the study and the research as much as her mother before her. The dataset was passed to St George’s to share and preserve for the future – for all, for good, forever.

Oakeshott, P., Reid, F. (2021) The Cambridge cohort of open spina bifida. Figshare. DOI 10.24376/rd.sgul.14438780. Available at https://doi.org/10.24376/rd.sgul.14438780

A podcast with Prof Pippa Oakeshott, where she discusses her 2019 paper based on this data ‘Walking and living independently with spina bifida: a 50‐year prospective cohort study’, can be viewed on the Developmental Medicine and Child Neurology YouTube account.

Exploration of Disease Past and Present

What do these two resources, one containing information dating back to 1841, the other published in 2021, have in common? Both are maintained in a digital format, both add to our knowledge of a specific subject, and both have purposes that will evolve over time.

However, the everchanging technical landscape means that digital records essential for medical research are at risk. The importance of our digital records means there is a need for digital preservation to ensure these records remain accessible in order to protect our knowledge and investment, and ensure that future generations of researchers have the opportunity to access the knowledge contained within.

The historical records also provide a link between the past and present, and show the medical advances made over time. In 1865, a seven-month-old baby called Harriet (or Elizabeth) Garton was admitted to St George’s Hospital with a congenital meningocele, a type of spina bifida in which a sac of fluid protrudes through a gap in the spine. The only treatment available at the time was injection with iodine; it was not until 1895 that the first successful surgical operation was described. Although the iodine initially appeared to decrease the size of the tumour, little Harriet developed bronchiolitis and died five days after her third admission to the hospital: the doctor treating her blamed the disease on the ‘inclement’ weather when the child’s mother brought her to the hospital. Although the treatment was ultimately unsuccessful, the trial was seen as significant enough to discuss at length in an article published in 1866.

Illustration of the case, published in St George’s Hospital Reports, Vol 1 (1866) by Timothy Holmes, SGHMS/6/1/1; and the digitised post mortem case notes of Harriet Garton, infant, 10 Apr 1865, PM/1865/107.

Capturing and preserving our digital data allows us to place formal research datasets like the Cambridge Cohort of Open Spina Bifida alongside our understanding and treatment of the disease in 1865. It allows us to compare perceptions and innovative treatments over time. In 1865 surgery for spina bifida was not possible; now, it is part of standard care, with some surgeries even happening while babies are still in the womb. Our post-mortem examinations and casebooks include a number of cases of spina bifida and meningocele in infants aged between 3 days and 1 year, demonstrating how quickly babies’ health deteriorated without surgery in the past. Opportunities for future research includes exploring the genetic basis of neural tube defects like spina bifida and the use of stem cell technology as potential therapies.

Data for All, for Good, Forever

By actively managing our records and data and applying preservation tools and activities we can maintain the record and data’s ongoing viability. Key to achieving our goals is St George’s information management professionals including the Archivist, Research Data Support Manager, and Records Manager advocating for, and working with the owners of records and data to identify and actively manage their outputs.

The steps we take now to protect our digital records will ensure their longevity and the ability for researchers of the future to continue to access the knowledge held within. St George’s, University of London’s mission is to pursue excellence in academic medicine, healthcare and science, informed by a global outlook by creating and sharing knowledge. By identifying records for digital preservation, we ensure their availability for good, forever, and that the data contained within is available to all.

Breaking Down Barriers: Harnessing the power of our people

The World Digital Preservation Day theme for 2021 is ‘Breaking Down Barriers’ and focuses on how digital preservation supports digital connections, unlocks potential and creates lasting value.  In this post we’ll look at the work we’ve been doing to identify areas in the university holding records of interest for long-term preservation.  By connecting with people and areas of the university who previously were not involved in the project we are unlocking the potential of the records and creating lasting value.  

This blogpost has been written by St George’s Records Manager Kirsten Hylan, Archivist Juulia Ahvensalmi, Records Manager Kirsten Hylan and Research Data Support Manager Elizabeth Stovold. You can engage with the day and find out more about our work on the Museum and Archives Twitter account, and using the hashtags #WDPD2021 and #SGULwdpd2021.

World Digital Preservation Day, organised by Digital Preservation Coalition, an international event to highlight the importance of digital preservation. The text displayed here is in Finnish.

Breaking down barriers

St George’s, University of London (SGUL), is a specialist health and medical sciences university in South-West London.  Since 2016 the Archivist, Research Data Support Manager, and Records Manager have worked together to advocate for digital preservation, successfully winning funds for a system, and identifying areas that hold records that require a long-term storage solution. 

But how do we reach people outside our networks to broaden the digital preservation conversation and demonstrate how it has relevance to those people who hold the records?  And how do we identify records for preservation in areas that previously held none? 

Two approaches have so far helped us broaden our scope:

• Our Covid-19 story and the Executive Board. During the pandemic we have attempted to collect all Covid-19 material produced by SGUL, including communications, social media, governance records, and research.  However, to date we were conscious that we weren’t capturing or having sight of all the material produced.  Our Executive Board has oversight of strategic and operational matters at SGUL.  In May we took a paper regarding our work to the Executive Board and as result several members of the Board highlighted areas in the university generating education, equality, diversity, and inclusion, and REF submission records that should be considered for permanent preservation.  The move to online education, for instance, has been a huge change and the records documenting the transition should be preserved.

• We expanded our project board to include representatives from External Relations, Communications and Marketing and from Joint Research and Enterprise Services.  By inviting new voices on the board we obtain different perspectives and reach across barriers. 

Reaching out to people has led to new insights, for us and hopefully also for those we have spoken with. We have for instance had conversations about how the use and the perceived value of records can change over time. Depending on circumstances, records that may not be considered of archival significance actually have consequence beyond their normal lifecycle and are of lasting value to the university.

We have demonstrated this in our time capsule – another idea that came about from our lovely new board members. We hold records in the archives in various formats: there are manuscripts, printed books, typescript minutes, photographs, audio cassettes, LP records, microfilm, floppy disks, emails, as well as various digital renditions of each of these as .pdf, .jpeg and .wav files. Often it is easier to see the value of an old manuscript letter, but it is equally important to take steps to preserve emails, tweets, and any other digital material we now create. The time capsule showcases records throughout the history of St George’s, from a letter from Edward Jenner and minute books discussing Victorian remote communication systems to tweets and Teams meetings.

Time capsule for World Digital Preservation Day 2021, St George’s, University of London.

Bringing it all together

People and the knowledge they hold of an organisation and what makes it functions and the issue it cares about can be seen as key to making connections and identifying digital content for preservation ultimately unlocking the potential of the records.  Digital preservation should not be seen as a record keeping issue or an information technology challenge.  Instead, we need to create a community working together to highlight digital objects for preservation to the preservation team. 

We continue to look forward for advocacy and outreach opportunities to promote digital preservation and chances to work with areas of the universities we haven’t had an opportunity to work with previously. 

If you are interested in learning more about digital preservation at St George’s, or would like to get involved, please contact digpres@sgul.ac.uk.

‘Digits: For Good’: Vaccinating Harrods and Selfridges, or, (Digital) preservation of COVID-19 and influenza records

Digital Preservation Day 2020 celebrates the positive impact of digital preservation. The theme ‘Digits: For Good’ focuses this year on the creation and preservation of research and development data used in finding a vaccine for COVID-19. In this post we’ll look into the work we’ve been doing to preserve these records, and also what the archives can tell us of past pandemics. This blogpost has been written by St George’s Archivist Juulia Ahvensalmi, Records Manager Kirsten Hylan and Research Data Support Manager Michelle Harricharan. You can engage with the day and find out more about our work on Twitter at @CollectionsSgul and @sgullibrary and using the hashtags #WDPD2020 and #SGULWDPD2020.

Our COVID-19 story 

At St George’s, University of London (SGUL), a specialist health and medical sciences university in South-West London, the Archivist, Research Data Support Manager, and Records Manager have joined forces to advocate for digital preservation.   

When it comes to meeting the challenge of preserving our digital materials, we have found that by bringing together staff members from different areas of the University we can utilise different skills and internal networks to achieve our goals.   

As part of the work we are undertaking around digital preservation, the team aims to collect all Covid-19 related material produced by SGUL. This includes a variety of documents in a variety of formats, produced by different parts of the university, including 

• Communications, such as emails, web pages, FAQs, video recordings and social media. These provide evidence of our response to the crisis and our management of it – something that will be both interesting and important to keep for the future. Communications sent out to students, staff, alumni as well as those externally available will tell the story of how St George’s reacted to the pandemic 
• Governance records, including minutes of meetings. These provide evidence of the conversations and decision-making about the responses and management of the pandemic 
• Research, including recording the range of Covid-19 research St George’s researchers have been involved in throughout the pandemic as well as our researchers’ incredible work in the national and international media. Research data from these studies are also important to collect and preserve for the long term.

To date we are curating and preserving the items that we aware of, and we have started conversations with departments such as External Relations, Communications and Marketing to identify material we may have missed.   

We are conscious of the need to collect the full complement of Covid-19 material as ultimately this material will be an important part of our Archive in years to come and support future research.   

Looking back 

The majority of the material related to COVID-19 is digital, but that is not the case for most of the material held in the archives (although in the future that is of course likely to change!). The one pandemic most often compared to COVID-19 is the 1918-1919 influenza pandemic, known most commonly (and misleadingly) as the ‘Spanish’ flu, or ‘the Grippe’. Estimates of the number of deaths caused by it vary anywhere from 17 to 100 million people worldwide. 

In order to understand more about the current pandemic, and our responses to it, and to learn from our past mistakes, we need to look into the past. How did St George’s, then, respond to this pandemic? Well – the answer is that we don’t really know. The minutes of the Medical School (later SGUL) committee and council make no reference to the pandemic. St George’s Hospital and Medical School Gazette, journal produced by St George’s staff and students between 1892 and 1974, notes in February 1919 that the out-patient department and many wards at the hospital had to be closed as so many nurses were off sick, but the medical school records don’t reveal much more (although St George’s Hospital records, which are held at the London Metropolitan Archives, may hold more information). 

St George’s Hospital and Medical School Gazette, Feb 1919. Archives and Special Collections, St George’s, University of London.

What we do have is historical post mortem examination records, which we are currently cataloguing and making available online. These records provide an incredible source for studying death and disease in 19^th and early 20^th century London. They chart, among other things, the 1854 cholera epidemic, show how prevalent tuberculosis was, and contain numerous fascinating and illuminating cases, such as that of the pastry chef murderer in 1908. 

Post mortem and case book 1846, PM/1846. Archives and Special Collections, St George’s, University of London.

When we started cataloguing the volumes for 1918 and 1919, we were expecting to find plenty of examples of influenza, and were surprised when, well, there just weren’t that many.  

There were, of course, some cases, and many that sound troubling, such as the case of Ada Bell, a soldier’s wife aged 32, who died at St George’s 31 Oct 1918. Her illness was initially diagnosed as pneumonia, but she was brought to the hospital delirious, coughing and suffering from diarrhoea, deafness and shortness of breath. Her cause of death was deemed to be typhoid fever and influenzal bronchopneumonia. 

Post mortem case of Ada Bell, [Wife of] Soldier, 32, PM/1918/240. Archives and Special Collections, St George’s, University of London.

As the symptoms were varied, cases were sometimes misdiagnosed as dengue, cholera or typhoid, for instance. Of the overall deaths in those two years at St George’s, influenza cases account for 5.5% of all the cases: the yellow line in the graph below shows cases where influenza was reported to be the cause of death (or, to be more specific, cases in which influenza is mentioned in the post mortem report). We don’t, however, have the admissions registers for the hospitals, so we cannot tell the number of cases overall, only the number of deaths. 

There is a relatively large number of ‘unknown’ causes of death during these years as well (shown in turquoise in the graph below) – these are cases for which the records enter no cause of death and no details on the medical case, and they may or may not include some further influenza cases. The graph also shows other respiratory tract diseases (in green) and digestive system diseases (in purple).  

Deaths at St George’s Hospital 1918-1919. Source: Post mortem examinations and casebooks, PM, Archives and Special Collections, St George’s, University of London.

The 1889 influenza 

Influenza was of course not confined to these years only. Every so often influenza cases would flare up, and the previous time this happened on a large scale in 1889-90. With our propensity for blaming single countries for viruses, this pandemic is sometimes referred to as Russian flu and, according to some theories, it may have played a part in immunising those who had it against the 1918 flu, which appeared to disproportionately strike the younger population. 

There were attempts at finding medicines to cure the disease, and there was a minor scandal when the name of the teacher of materia medica (the study of drugs to treat diseases) at St George’s was found printed on an advertisement for an influenza cure: despite denying his involvement, he had to resign. The advertisement does not actually tell us what the medication consisted of, but we can only assume it did not work. 

‘Woodland affaire’, 1890. Archives and Special Collections, St George’s, University of London.

Influenza also continued to be a concern even after the 1918-1919 pandemic had abated, and in the 1926 St George’s decided to get involved in researching vaccines for influenza. There was a public funding campaign for the project, and in February 1927, St George’s published a letter in The Times: 

‘following on the traditions established here by Jenner and Hunter in their historical work, we are […] engaged in special research with the object of ascertaining what causes influenza, how it can be controlled, how it can be prevented from spreading and, finally, whether a really effective treatment can be found for it’. 

‘Influenza epidemic: Research at St George’s Hospital’. The Times, 15 Feb 1927.

The arguments found in the plea for funding sound familiar: the ‘heavy burden which this scourge places on the community by the dislocation of business and loss of working power’. Because the project was widely publicised, the public was eager to take part, and we have some wonderful letters from people writing in and suggesting their own cures and theories of the causes of influenza: we will be tweeting these, so look out for them on our Twitter feed! 

Records relating to influenza research. Archives and Special Collections, St George’s, University of London.

The money for the research was found, and the subject of the vaccinations was chosen to be the staff of Harrods and Selfridges on Oxford Street, as well as the staff at Quin & Axtens and Bon Marché in Brixton, department stores which had recently been acquired by Selfridges. Altogether 345 people were vaccinated.  

Table 1, ‘Report on anti-catarrh inoculations (catarrh of respiratory mucous membranes)’, 1928. Archives and Special Collections, St George’s, University of London.

The various reports, meetings minutes and correspondence held in the archives tell us how the research subject was decided on, issues to do with the research, space and equipment (including the building of a spiral staircase in the laboratory – obviously an essential architectural refinement) and, most importantly, how the research was conducted and what the results were. 

The report of the findings in 1928 shows the research was conducted using attenuated vaccine ‘obtained from pathological fluids or secretions or from a mucous surface of persons who exhibited clinical evidence of disease’, with the assumption that the disease was called by a bacterium called Pfeiffer’s bacillus, or Haemophilus influenzae (also known as h-flu). It was not until a few years later, in 1933, that it was definitely established that influenza was actually viral, and not bacterial.  

And the results? Well, it appears that 1927 was a disappointing year when it comes to influenza, at least from the researchers’ point of view. The vaccination campaign was, however, declared a success, and there were plans to repeat it the following winter (although if that did happen, the records have not survived). 

Response to ‘Report on the work carried out in the Research Laboratory’, 11 Jul 1928. Archives and Special Collections, St George’s, University of London.

The preserved documents reveal an on-going preoccupation with and interest in influenza, even though (given what we are currently going through) there does not appear to be much sense of urgency, certainly not at the time of the 1918 influenza. 

Although the research was not successful in finding a vaccine that worked, it was an important step on the way: you won’t know what works until you try it. Our knowledge is cumulative, and dead-ends are part of research – not everything can work out, but it all adds up. The first influenza vaccine was developed in the 1940s, and (soon, hopefully) we will see a COVID-19 vaccine. 

Looking forward

What does this all have to do with digital preservation, then? Compared to the 1918 and 1889 flu pandemics the records we are creating today are largely digital. The technology supporting these records change rapidly and may one day become obsolete. If this happens, we could lose access to valuable records, including our covid-19 records. St George’s has recognised this and is actively engaged in looking after our digital information for the long term. We’ve recently purchased a digital preservation system, Preservica, to help us to preserve our digital records. We are working to develop methods and processes that will allow us to preserve the records that are currently being created, and to do so in a meaningful way that will work for colleagues across the organisation. 

Rather than thinking of digital and physical something entirely separate, we should consider them as part of a continuum, as it were. Preserving digital material can be challenging, and we can’t always replicate the processes used for paper with digital material, but the gaps in the past records show the need to preserve evidence of the current pandemic, not only for historical interest but to provide evidence of what happened and how we dealt with it. 

If you are interested in learning more about digital preservation at St George’s, or would like to get involved, please contact archives@sgul.ac.uk.