The idea for this project came from David Matthews, Professor of Diabetic Medicine at the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM). He had listened to his patients talking about the many changes in treatment they'd experienced, and felt there was an urgent need to make a record of these memories. For future researchers, this record would cover a crucial period in the history of diabetes - between the beginning of insulin treatment in 1923 and a possible cure in the 21st century. Since diabetes is largely managed by patients themselves, their experiences would make a vital contribution to the historical record.
He read an article by Helen Lloyd about an oral history project she had managed and asked her to make a trial recording with one of his patients (1. Ann) to see if it would provide information that was not otherwise available. The result was an account of what it was like to live with diabetes over a period in which changes in glucose monitoring, insulin administration and recommended diet had a great impact on the patient's daily life. It was also a period of significant changes in the health service, the doctor/patient relationship and in social attitudes to diabetes. Above all, the patient provided an insight into the hidden history of "what it was really like" to have diabetes over a lifetime.
A meeting of OCDEM staff decided that 50 recordings would be sufficient to cover diagnoses in each decade, both types of diabetes, patients with a variety of the most common complications and those with few health problems, plus a range of social and ethnic backgrounds.
We are very grateful to the Wellcome Trust for having the vision to fund this unusual project. It is a priority of the Trust that the results of their funded projects should be made widely available and they generously supported us in our aim to make all the recordings easily accessible on a website - something which we believe has not been done before. We felt it was important to allow the voices to be heard, as well as providing transcripts, because so much information is communicated by accent, intonation, emphasis, hesitation, laughter and tears.
2. The value of oral history
(The following is based on Professor Matthews' application to the Wellcome Trust)
Oral history often involves the eliciting, through an interviewer, of eye-witness accounts to enable, or to supplement, the historical reconstruction of past situations and events. But in investigating the oral history of diabetes we wish to record patients' experiences and memories because of their inherent value in answering such questions as "What did it feel like?", "How did others react?", "What did parents, brothers, sisters think?" The success of oral history, when conceived in these terms, depends on the skills of a researcher, particularly in terms of approach and listening ability. Questions need to be open-ended, to allow freedom of recall and to allow the interviewee to define what count as significant connections between experiences. Some aspects of interviewees' recall can be checked against known history. We can establish the exact date, for example, of the change of insulin strengths from a confusing 40 or 80u/ml to a universal 100u/ml. But here it is not a reinforcement of known history which is sought so much as personal responses to known history - responses, based in memories, which come with an in-built authority and validity. Our researcher Helen Lloyd has found that people become particularly fluent when talking about their own lives, because in this one field there is nobody more expert than they are. We wish to record how it felt to have diabetes and how it feels now to have had diabetes then. In these aspects the oral record is the prime source.
Any present-day oral history will be that of a survivor population, and thus will be coloured by success rather than failure. The 50 and 60 year cohort does not, by definition, encompass those for whom diabetes was literally a death sentence. But we are not seeking success stories as such; we are hoping to construct a well-illustrated picture - coloured but not distorted - of the life of a diabetic patient decade on decade. The technique is not to record a series of anecdotes, but rather to allow a freedom to recall the mundane and the routine. So we judge that the survivor bias will not be damaging to this exercise.
3. How we set about the project
Helen Lloyd first gave talks on oral history to staff at four hospitals: OCDEM, the Worcestershire Royal Hospital, Leicester Royal Infirmary, and The University Hospital, Birmingham (Selly Oak), inviting suggestions of possible interviewees, and emphasising that the most articulate interviewees often have no educational qualifications: the main qualification is simply that they should be interested in reflecting on their own lives.
Staff asked suitable patients if they would be interested in receiving details of the project. The patients were then sent a full project outline; this emphasised that if they agreed to be recorded, everything they said would be made public. Some patients decided not to proceed, but most returned a slip which gave permission to Helen to phone them for an initial conversation. She conducted around 100 phone conversations and made notes on them, with a view to the selection of 50 people who covered a wide variety of backgrounds and experiences. (It was important for these calls to be kept as short as possible, so that the interviewees eventually selected would not feel that they had already told their story.)
The selection was made very gradually: throughout the period in which the interviews were recorded, Helen had regular meetings with Professor Matthews, and with OCDEM Research Nurse Sue Beatty, to discuss what areas had been covered to date. The telephone notes were then used to select the next few interviewees - or further appeals were made to hospital staff and to Diabetes UK to find interviewees who would fill particular gaps.
4. Why the interviewees agreed to
be interviewed
Many interviewees said that they had benefited from past research and were glad to help with future research. Others felt they had learnt a lot from having diabetes and would like to pass it on to others. Some said they welcomed the chance to reflect on their experience in a pause from the busy routine of their lives. All said they would be as honest as possible about their experiences of diabetes, for the sake of the historical record.
It was hard to find people from ethnic minorities willing to be interviewed, despite the prevalence of diabetes in some groups. We eventually recorded 10 people from ethnic minorities out of the total of 50, and some of these offered various explanations for the shame attached to diabetes in their cultures.
5. Use of medical notes
Members of staff who recommended potential interviewees gave us their date of birth, date of diagnosis and type of diabetes. When selected for interview, patients gave permission for the member of staff who had recommended them to look up key dates in their hospital notes, to help prompt their memories. In some cases the notes were not obtainable, having been sent to another hospital or department where the patient was receiving treatment. In many cases notes went back only a few years: when patients had moved, their notes had not always moved with them – and current notes had relied on the patient’s own ‘oral history’ memories of what had gone before. Where notes were available, this is made clear either by the interviewer or interviewee.
6. Preparation for the interview
The time of the interview was arranged by phone and confirmed in a letter, which enclosed consent forms and asked patients to jot down on a post-card around half a dozen key dates in their medical histories or personal lives. This allowed them time to check dates with their G.P. or a member of their family - and during the interview many interviewees found that merely holding the post-card gave them confidence. They were also asked to look out any photos or documents that might be of historical interest; many of these appear on this website.
7. How the interview was conducted
The interviewees each gave up half a day to make a recording in their own home. Interviewer and interviewee sat side by side on a sofa or adjoining chairs, to avoid constant eye contact, since nods and smiles (as seen in television interviews!) can become tiring for both parties and, more importantly, can lead the interviewee to seek the interviewer's approval. Instead, interviewees occasionally glanced sideways to check that they had the interviewer's attention, but otherwise talked out into the room, thus sometimes saying things they might have found hard to say face-to-face. Where a sofa was used, a pile of cushions or pillows was placed between interviewer and interviewee, partly to avoid the embarrassment that might be caused by sitting close together and partly to provide support for the interviewer’s arm while holding the microphone. (The interviewer prefers to use a hand-held microphone to microphones fixed to lapels, in order to respond to changes in voice level. Also, jewellery or a hearing aid can knock against lapel microphones – and not everyone has a lapel!)
Both interviewer and interviewee held a post-card, with a few key dates on it (and, in the case of the interviewer, a few single-word subject headings). It was felt important that there should be no written list of questions; such a list would give the impression that particular kinds of answers were desired, whereas the aim was to allow interviewees to talk freely about whatever was most important to them.
From time to time, the interviewer would pause the recording to discuss with the interviewee what should be covered next (for example, after an account of schooldays, would it be best to talk about the first job or the first boyfriend?). Thus the structuring of the interview was done in partnership with the interviewee, and at the end of the interview there was a discussion about what had been left out; this sometimes led to a few additional minutes of recording. It was emphasised both before and during the interview that the interviewee was free to skip over any part of their lives that they did not wish to be made public: thus they could talk about how stress had affected their diabetes at some particular time, without necessarily explaining the cause of the stress.
The interviewer also reassured the interviewee that it didn't matter if they digressed, as the track summaries and digital technology used on this website would allow researchers to find the material they wanted, irrespective of the order in which it was recorded. Indeed, interviewees were encouraged to range as widely as possible - given that the interests of future researchers could not be predicted.
People who have had diabetes for a long time will already have repeated their "histories" to medical staff on many occasions. A very small number of our interviewees treated these recordings in the same way and gave short answers that indicated that they were waiting for the next question. This may have been because the project description and consent forms, on hospital headed notepaper, identified the interviewer with the medical establishment. However, most understood that she had no medical background (as emphasised in the preliminary phone conversations and confirming letters) and, deriving confidence from their own expertise, talked at length without interruption. Many said that they had never before talked in this way about diabetes, that it had "made them think" and that they'd enjoyed the experience.
8. After the interview
A CD copy of the recording was sent to each interviewee with a thank-you letter, within a week of the recording, to check that they were happy with what they'd said and to ask them to let us know if they had made any slips of the tongue. No-one withdrew from the project as a result of listening to their CD - and many phoned or wrote to say that they were amazed and pleased at their own fluency!
9. How the aim of putting all the
recordings on a website affected the project
It may have deterred a few potential interviewees, but did not determine our selection of interviewees from the majority who said they'd be willing to be recorded. We knew that if a website user found someone's voice boring or hesitant, they could simply click on the written transcript.
Interviewees said they were happy to talk honestly about every aspect of their diabetes, apart from sexual dysfunction. Three written accounts of sexual dysfunction can be found by typing the words into the Subject Search or by selecting Interview 51. While it's a limitation to have these accounts separated from whole life-stories, we feel that this is a minor disadvantage when set against the many advantages of providing public access to complete original recordings. Researchers can find what is relevant to their concerns rather than being limited to our selection, and all generalisations (even those in this account!) can be checked against the original material.
Second Project : interviews with family members and healthcare professionals
1. Why we decided to add these interviews
The idea of interviewing family members came from people with diabetes recorded for the first project who said they ‘could not have survived’ without the help of a relative. In some cases, they were referring to rescue from unconsciousness, and in others to moral support with diet or exercise. We concluded that the role of the family in helping patients to ‘survive’ - in any sense of the word - ought to form part of an oral history of diabetes.
The idea of interviewing healthcare professionals arose from the worldwide popularity of the first phase of this website. It was clear that it was becoming a major resource for all those interested in the history of diabetes in living memory. We felt that it should therefore include interviews with healthcare professionals to provide a more complete picture.
2. How the interviewees were chosen
In the case of healthcare professionals, initial recommendations all pointed to pioneers in diabetes research, but we felt that to confine our interviews to this group would not adequately reflect the variety of care described by the people with diabetes recorded for the first project. A few of them had been treated by pioneers, but many had been treated by people who had no specialist knowledge of diabetes or, in the earlier decades, very little knowledge of diabetes at all. So we decided that for this patient-centred website we should represent the range of specialists and non-specialists that had been encountered by people with diabetes.
The first project relied greatly on patient lists, but there were no equivalent lists for healthcare professionals or family members. Interviewees were recruited in both categories through talks given by Helen Lloyd to a variety of groups, through advertisements in professional journals and through pursuing long chains of personal recommendations. Members of Diabetes UK staff also contacted healthcare professionals who’d been members for several decades and the families of people who’d had diabetes for many decades.
In the case of family members, we also recorded the relatives of six people with diabetes interviewed for the first project.
3. How the existence of the website affected those interviewees who had seen it
Unlike in the first project, several potential interviewees, who had shown interest during a phone conversation, decided that they did not want to be interviewed after looking at the website. With the first project, we had stressed to potential interviewees that the interviews would be made public and explained to those unfamiliar with computers that it would be “like being on television”. We had also assured them that they could withdraw their interview at any stage, but nobody did so. This time, the existence of the website acted as a deterrent at an early stage, particularly for several interviewees from an African-Caribbean background, who said that they or their family members felt that the website was too public.
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Those interviewees who did agree to be recorded realised from looking at the website that this is an important source of material for future researchers and so they spent more time looking out old photos, documents and artefacts: that is why there are far more of such items provided by the family members and healthcare professionals than by the people with diabetes who were recorded before the website existed.
Projects 1 and 2: outcomes
1. How the three categories of interview differ
The longest interviews were, naturally enough, provided by people who had had diabetes for most of their lives or healthcare professionals who’d specialised in diabetes for most of their career. The shortest interviews were with family members for whom involvement with diabetes had only been a small part of their lives.
The interviews with healthcare professionals – or perhaps interviews with anyone about their professional life - could be caricatured as saying ‘We made mistakes in the past; we learnt from these mistakes – and now we have achieved wisdom.’ That is certainly a caricature, but it does suggest the truth that those whose only experience of diabetes was professional tended to speak with a greater sense of success and confidence than those who’d encountered diabetes in themselves or in someone they loved.
People with diabetes, and their family members, often expressed feelings of failure: even those who were successful in their own professions spoke with an acute awareness that ‘the spirit is willing, but the flesh is weak’ and that, even if they were to do everything that they were advised to do, no talk of ‘patient empowerment’ could disguise the fact that the outcome was uncertain. However, some said they’d learnt valuable lessons from having diabetes. One woman with diabetes, 81.Joan B, said: “I think that with everything that’s bad that happens to you - if you could class diabetes as bad - it gives you more understanding of other people's problems.” A mother with diabetes, 16.Gillian, whose daughter also has diabetes, reflected on her life and the experience of being interviewed about it: “when you talk long enough, and you don't get many opportunities to talk about diabetes…it's very easy to become negative, but there are most definitely lots of positives. I'm grateful, I'm really grateful to have had a chance to realise earlier than most of us must do… that I'm not immortal and that time can be short, and you do need to get on and do things while you can do them. And that is such a wonderful thing, and I don't think I've wasted time at all, and I have diabetes to thank for that. And I also feel fairly positive about the future, because I really do believe we've seen enough changes over twenty years to expect that the life of diabetics is going to improve beyond belief, that my daughter's future is much brighter than even mine, and I don't feel despondent about mine.”
2. Reactions to the website
The first phase of the website, which contained 50 interviews with people with diabetes, won ‘Oxford University’s ‘IT in Teaching and Learning Award’ and was chosen by the Wellcome Trust as a Research Highlight. Extracts from the interviews have been used in a variety of publications and websites, including ‘Diabetes (Facts)’ (Oxford University Press, 2008), the National Health Service website, www.diabetes.nhs.uk, and various Diabetes UK publications. In 2008 alone, the website received over 900,000 hits and links were made to it from websites all over the world, including many countries for which English is not the first language. Below is a small selection of the comments received in English:
“I really do think that this is the primary source material for future historians and am delighted that it has been made available to us all.” Dr. John Ford, medical historian, UK
“Thank you very much for compiling the diabetes oral histories…I have listened to them repeatedly over the last few months. I am nineteen and was diagnosed with type 1 diabetes when I was seventeen. The interviews gave me a sense of myself in time, an appreciation for modern technologies, and they make me feel more grounded, less alone.” Jonah Berele, Chicago, USA
“An absolutely inspiring project, and I’m certain to become a frequent user of the site’s topic search facility.” Rob Saunders, Editor, “Diabetes Update”, UK
“An Oral History of Diabetes is a project like no other…Check it out.” ‘Diabetes Mine’, San Francisco, USA
“Great to see and hear the transcripts, summaries and audio (a lot of work). I also really liked your section on methods.” Dr. Graham Smith, Lecturer in Healthcare Studies, Sheffield, and Chair of the Oral History Society, UK
“I found the discussions of diabetes care from years ago to be fascinating, and the unmistakable instances of British understatement are most entertaining. Sometimes we feel inundated with complexities, overburdened, and stressed to extremes, and not without good reason. But these histories can help restore a little perspective, particularly when subjects such as WWII air raids, and digging out from beneath the rubble, arise.” “Go do a test” website, USA.
“I am 31 and have been a Diabetic for over 19 years. I have always worried, more in recent times, about long term effects and whether it is truly possible to lead a long and normal life. Upon reading and listening to some of the accounts detailed on your site, I realised this was more than possible.” Lee Hawley, Bromley, UK
“A fascinating project that will be of interest to healthcare professionals, historians, people living with diabetes, and amateur history buffs alike.” ‘The Diabetes Blog’, USA
“The histories can be read, and heard in their own words, on a superb project website…Anyone interested in the human aspects of health systems really should visit this web site.” Professor Martin McKee, London School of Hygiene & Tropical Medicine.
“I’m finding these stories completely addictive. Some of them are like watching a car crash, others are very inspiring.” MedKB.com
“There are currently 50 different stories and they are well worth looking at.” East Midlands National Primary Care Development Team, UK
“I will leave you all with a link I’ve been visiting quite a lot: Diabetes Stories…if these people could do it, with no experience to draw on and such limited resources and knowledge, and manage to cope and live a good and happy life, then surely Becca and I will be fine.” Blog based in Virginia, USA
“A repository of fascinating stories about the experiences of those who have had diabetes for up to six decades.” ‘Diabetes Today’ magazine, Victoria, Australia
“Diabetes-Stories…can entrance students and provide the basis for most approaches to problem-based learning.” Journal of American Society of Biochemistry and Molecular Biology
“There is thorough information about the methodology of the study and the raw data gathered can be viewed, downloaded or a query can be run on the database.” Intute: health and life sciences database, UK
“I found this great web site the other day. It’s called “Diabetes Stories: Personal Tales of Diabetes through the Decades…we’ve certainly come a long way from Fehling’s solution in a test tube.” “Living Well With Diabetes” blog, Salt Lake City, USA.
“Diabetes-Stories – anyone seen it before? It’s really interesting,,,If you’ve got a bit of time to kill or are looking for a distraction, take a look.” ‘Reality Check’, website for young adults with diabetes, Australia.
“They’re really amazing stories”. “That is a really neat site.” “Very cool.” Comments on Children with Diabetes website, USA
We look forward to receiving more comments on the new interviews with family members and healthcare professionals.
