“The best teaching is taught by the patient himself”
Sir William Osler
Regius Professor of Medicine, University of Oxford (1905-1920)
DIPEx International is a collaboration of researchers and health professionals who have been inspired by the UK-based DIPEx charity which publishes healthtalk.org. Collaborating research teams, working in the University and voluntary sectors, collect narrative interview studies of people’s experiences of health issues. The main findings from these studies, illustrated with video and audio extracts from the interviews, are published on country specific websites. Each section of the website includes 40-50 interviews (collected nationwide) and are published online with hundreds of video clips alongside commentary and contextual information on the health issue. The websites are all freely available, have won numerous awards, and are widely used by patients, family members, clinicians in training as well as teachers and researchers and to stimulate improvements to healthcare.
The original idea for a ‘Database’ of Individual Patients’ Experiences (hence DIPEx) came from Dr Ann McPherson, an Oxford GP and writer and Dr Andrew Herxheimer, clinical pharmacologist and emeritus fellow of the Cochrane collaboration (see healthtalk.org/Overview). The UK research is conducted by the Health Experiences Research Group (HERG) in the Nuffield Department of Primary Care Health Sciences at the University of Oxford. The first websites were published by the DIPEx charity in 2001 and 15 years later include nearly 100 different health and illness sections. Colleagues in Japan, Germany, Spain, Netherlands, Korea, Israel, Canada and Australia attended talks by members of HERG and arranged training so that they could establish similar projects in their own countries from the mid 2000s onwards.
Encouraged by the worldwide interest in this approach to publishing rigorous patients’ experience research in a highly accessible format, the founder groups initiated annual meetings in 2010 and eventually established DIPEx International as a UK Company in 2013. In September 2011 we met at the Monash University Prato Centre (Italy) for a two day workshop on emotions and chronic illness. The research was written up for a special issue of the journal Chronic Illness, which was published in 2012 We met in Oxford in 2012, in Doha in 2013 and in Kyoto Japan in 2014, to coincide with the World Sociology Congress in Yokohama and in 2015 we met in Freiburg, Germany where our colleagues organised a successful two day symposium on ‘Narratives in Practice’.
The projects share an ethical funding policy and the research is funded by national health research streams and charities and by the generous support of volunteers and patrons. The health narrative studies are also written up for publication in peer reviewed journals .