1. Diabetes-Stories http://www.diabetes-stories.co.uk The Oxford Centre for Diabetes, Endocrinology and Metabolism & The Wellcome Trust Introduction Helen Lloyd has recorded the memories of 50 people with diabetes, diagnosed between 1927 and 1997. The interviews can be heard on the website www.diabetes-stories.com which won Oxford University’s ‘IT in Teaching and Learning Award’ and was chosen by the Wellcome Trust as a ‘Research Highlight’. Results The recordings are available via our website www.diabetes-stories.com and CD copies will be archived in the British Library Sound Archive and at OCDEM. The website will also be archived by the U.K. Web Archiving Consortium. All the transcripts can be downloaded from the website. 50 interviews give evidence of the day to day effects of changes in equipment, medical treatment and diet; the financing of treatment before the NHS; changes in the NHS and in relationships between patients and medical staff, and also changes in society’s attitude to illness. Examples of themes that emerge are: the shame attached to diabetes in different cultures, the impact of the condition on patients’ families, attempts to deceive medical staff, and the emergence of the idea of ‘expert patients’. Background The idea for an oral history of patients’ experiences came from David Matthews, Professor of Diabetes Medicine at the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM). He had listened to patients talking about the many changes they had 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 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 history of medicine. Procedures The recruitment and selection of patients, ethical procedures, and interviewing techniques are described on the website www.diabetes-stories.com via the Methods section of the Research menu. The complete unedited audio recordings have been placed on the website, with short audio samples, full written transcripts, indexed summaries, a selection of themes, an inter-active database, word and phrase searches, and photos of people, documents and artefacts lent or donated by the interviewees. 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. Project 1: Interviews with patients Introduction Helen Lloyd has just completed 50 new interviews with people who have cared for those with diabetes, including family members and healthcare professionals: these will be added to the existing interviews with patients on the website www.diabetes-stories.com later this year, to make a total of 100 interviews. Results One hundred interviews, lasting between one and two hours each, will be freely available 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. 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. Background The idea for recording family members came from patients who were recorded for the first project and from relatives encountered in their homes: they suggested that the support of relatives is often crucial to patients’ survival and should therefore be part of the historical record. Memories of healthcare professionals were also recorded, to enable www.diabetes-stories.com to provide a comprehensive record of experiences of diabetes in the twentieth century. Procedures It was much more difficult to find a wide range of interviewees than in Project 1, with no equivalent of patient lists to consult. Existing contacts were used to recruit interviewees, plus talks at hospitals, articles in professional journals and chains of recommendations which led all over the UK. Some family members were related to patients already on the website, but most were new contacts. The healthcare professionals recorded included doctors, nurses, dietitians, and a podiatrist. The website will be re-designed to accommodate the new interviews and make links between them and the existing interviews with patients. Project 2: Who Cared? Interviews with family members and healthcare professionals Acknowledgments We are very grateful to the Wellcome Trust for having the vision to fund both projects. 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 the complete unedited audio recordings easily accessible on a website - something which we believe has not been done before. Professor David Matthews can be contacted via www.diabetes-stories.com Helen Lloyd can be contacted via www.oralhistoryconsultancy.co.uk. Figure 1: Screen capture from one Interview page of the website Figure 2: ‘Interviewee in uniform, 1968’ image from the second project