1. Diabetes-Stories http://www.diabetes-stories.co.uk The Oxford Centre for Diabetes, Endocrinology and Metabolism & The Wellcome Trust Introduction 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. 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, hesitation, laughter and tears. Aim To record the memories of 50 people diagnosed with diabetes in the 20th century and to make the recordings available on a website. Methods 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. Results The recordings are available via a website http://www.diabetes-stories.co.uk and will be archived in the British Library and at OCDEM. The interviewees talk about changes in diet and medical treatment and also about the attitudes to diabetes of medical staff and of the general public. Together, they chart changes in the National Health Service and in society’s attitudes to illness. Conclusions These 50 recordings unlock an area of experience and historical detail about diabetes that will fascinate readers, researchers and listeners for years to come. Discussion This website presents audio recordings of the life-stories of 50 people diagnosed with diabetes between 1927 and 1997. They talk with passion and humour about their daily lives and provide a unique oral history of what it was like to have diabetes during the twentieth century. Most agreed to talk about their experiences, because they felt they’d benefited from past research and so were glad to contribute to future research. Their stories are offered as a resource for historians, healthcare professionals, people with diabetes, and all those interested in the ways people remember and make sense of their lives. 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. (Select Transcripts on the Research menu.) While it's a limitation to have these accounts separated from whole life-stories, we feel that the compensations of providing public access to 50 original recordings amply compensate for this limitation. 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. We provide full unedited recordings, short audio samples, written summaries, full transcripts, and ways of locating sections of the interviews that cover particular subjects. The website is based at the Oxford Centre for Diabetes, Endocrinology and Metabolism and was funded by the Wellcome Trust. Figure 1: Screen capture from the Interview page of the website Figure 2: Screen capture from the Interview page of the website Results Figure 1: Screen capture from one Interview page of the website