This blogpost has been written by St George’s, University of London (SGUL) Archivist Juulia Ahvensalmi, Research Data Support Manager Michelle Harricharan, and Records Manager Kirsten Hylan.
‘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.
Post Mortem 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 Post Mortem 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 post mortem 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.
Please 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.