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Response to Review no. 817

We are very grateful to Dr Reid for her detailed, thoughtful and largely positive review of the website. The team at Kingston has worked hard to produce what we hoped would be a useful resource for many different types of enquirers, and, perhaps, to show others what might be done with types of institutional records. This response deals with the detailed criticisms and gives some background to the project.

What is now the Historic Hospitals’ Admission Registers Project began at the beginning of the century, when it was envisaged that the end product would be a compact disk containing an enhanced database of the information contained in the hospital admission registers of Great Ormond Street Hospital (GOSH), from 1852 until 1903. As with almost all projects, the methodology took time to be perfected, and challenges – both technical and practical – presented themselves at every turn. The demand by researchers for data covering the crucial Edwardian and early Georgian period encouraged us to extend the original project to 1914. By this time, technological advances demanded a website, which was never part of the original plan. Demand created its own supply; and, with each enhancement of the project, more was requested by users. We were (and are) committed to a free site, which brings its own challenges, as well as rewards.

It is heartening to see the use that an imaginative and experienced demographer could make of even a limited number of downloaded records. Most of the shortcomings highlighted by Dr Reid have already been identified by the team, and stem from the fact that the project is one that, like Topsy, ‘just growed and growed’. If we knew where we were going to end up, some of us might never have started, but we are all agreed that we would have asked for far greater resources from the outset. If I may, I shall deal with Dr. Reid’s points as they arise in the review. The size of the databases, alas, is not one million records (if only), but nearer 100,000. At present, the site has the admission registers for the main GOSH and those of the Hospital Convalescent Home. Records for the Evelina Hospital in Southwark, the Alexandra Hip Hospital in Queen Square, London, and Yorkhill Children’s Hospital, Glasgow, will be added during the next 12 months. We would dearly love to add other hospitals (paediatric and otherwise) to the databases, and have plans so to do, but this depends on institutional support and future funding. Out-patients do not feature in the database (except when they are admitted to the convalescent home), as only one early out-patients register survives for GOSH. This is a great pity, as we are conscious that the vast majority of patients never saw the wards, but a trawl of the archive has only unearthed this lone volume for GOSH and the team is not aware of the survival of outpatient records for any of the other children’s hospitals.

We would be happy to add images of the admission registers, and shall talk to the GOSH archivist to arrange to have this done.

The inclusion of the case notes for Dr Charles West was a late development. The team was aware (as are other researchers in medical records) of the richness and potential value of the information contained in case notes. We are also acutely aware that these records are not protected under the Public Records Act. Adding Dr West’s case notes represented not only a technological problem to be solved, but was intended to alert repositories and other projects to the potential for unlocking the wealth of data contained in the surviving volumes. The process was time-consuming and involved volunteer indexers and medical historians, as well as paid conservationists, and IT specialists. Since it was undertaken, we have been looking at ways in which more case notes might be added, economically and efficiently. To that end, we have identified two physicians at the hospital, whose case notes span the 1870s to the early 1900s, that we believe would add immeasurably to the usefulness of the website. We are applying to the Wellcome Trust for the money to undertake this, on the understanding that the project entails advanced technological developments that have yet to be tried and tested in the field. These two doctors do have very young patients, although it is becoming apparent that GOSH’s enduring policy of restricting the under-twos on the wards meant that there were far fewer babies and toddlers than appear, for example, in the Evelina and at Yorkhill.

The points regarding the criticisms of data reliability are more difficult to answer. At the beginning of the project, it was decided that, in order to respect the integrity of the original documentation, the data were to be transcribed as seen. Mistakes regarding forename and sex entered by the original hospital staff would be left in the original field, but would, it was hoped, be corrected in the standardised fields. A validation programme and process was created to spot and rectify obvious errors, and we will run this again, to pick up mistakes regarding forename and sex that were missed first time around.

The point about the doctors’ surnames is well taken. The mistakes crept in after Cromwell House was added to the website, and we failed to pick them up. This suggests that we were not as careful in our checking of the convalescent home records as we should have been, and this will be rectified. The gaps in the Cromwell House data are entirely due to lack of money, and, as a consequence, lack of time. We had to stop the standardisation of the street names in order to get the data on the site on time, and had no funding to apply ICD10 codes to this set of data. It is a great pity, and makes the site less useful than it might be. We have not given up hope that we might be able to complete this, but it is just not feasible at present.
We are acutely aware of the defects on the site regarding Cromwell House, and our mitigation is that the work was done on a shoestring, and we decided it was better to have something – no matter how flawed – on line, than nothing at all.

With regards the other point re the admitting doctor; we plead not guilty. The names of the admitting doctors have been standardised, and included in the search form as a drop-down under ‘Admission and Stay’.

The lack of surname standardisation is mainly due to lack of time and resources; the decision not to use soundex was taken after much debate. Who is to say what is the ‘correct’ spelling of a surname, and would we have been justified in imposing standardised spellings, when even the most common surnames have alternative forms?

Dr Reid’s view on the standardisation process is perhaps open to debate. The standardisation was undertaken towards the end of the process, prior to the application of metropolitan registration and sub registration districts. While it is possible that we might have been able to undertake the standardisation of addresses at the same time as inputting the data, there is a limit to the number of fields and the amount of data you can reasonably ask a volunteer to fill in at any one time. The additional fields would, in our opinion, have been putting too much of a burden on the volunteers, and, thus, the standardisation was done retrospectively, by one member of staff. Attributing registration and sub registration districts was immensely complicated and time-consuming, with consistency being a persistent problem; there are very many High Streets and Church Roads in the registers, and, ultimately, educated guesses had to be made in some instances. Nevertheless, we are committed to re-checking the data, and to making changes when we are alerted to errors and mis-attribution.

The disease data could not have been standardised as we entered the data. It was imperative that we gained a ‘feel’ for the sorts of disease descriptions that were being used, and this knowledge only came with time. Disease standardisation took not months, but years, to formulate to our satisfaction. We held meetings with medical historians and paediatricians, and put each stage of our thinking through a process of scrutiny before key decisions were made. The realities of using volunteer in-putters precluded any other approach, and we felt we could not ask them to apply fairly complicated standardisation techniques while they were in-putting the data. In future, it may be that a technological means of achieving the simultaneous application of standardisation might be found, but one works with what one has, and within very real time and resources restraints. The errors in standardisation highlighted by Dr Reid are very regrettable, and, once more, I plead lack of sufficient technical support in creating the validation programmes.

The lack of a glossary of medical terms is deliberate, as we decided that it would be reinventing the wheel, and our limited resources would be better spent elsewhere. Accordingly, we have provided what we hope is a comprehensive list of sites which have this information. It is debatable whether we could have put these links on the disease fields, but, at present, they are to be found on the Links Page. It would have been rather wonderful if we could have developed a disease classification with narrower groups, but time was not on our side, and this was one decision that was dictated by the realities of deadlines. We did talk at length about linking multiple admissions for one patient, but ran out of time before this could be done. The statement on this in General Help is misleading, and reflects our original intention, rather than the current reality, and this will be amended accordingly.

The most serious issue for researchers is, we know only too well, the restriction on the number of downloaded records. This has very real implications for academic researchers, and we have been – and are – as accommodating as possible to those who need to download large numbers of records. The reason for the restriction is to protect the work of many people – much of it unpaid – from hackers and those who might want to download the whole database and make illegal use of it. We will always treat requests for access to more material sympathetically, but this project has taken years to get to this stage, and we have to be aware of the unscrupulous who might wish to profit from that. If anyone else has a solution to this dilemma, we should be very happy to hear it.

It is gratifying that Dr Reid did find much to commend on the site, and I can assure readers that we will do what we can to correct omissions and mistakes as soon as possible, and that we are labouring to find the funding and institutional support to expand the site to cover more case notes and more hospitals. The original vision has changed over the years, but we still hold firm to the commitment to open up access to the recorded information on the lives of some of the most disadvantaged of Britain’s children to all who are interested.