DIPEx International is an association of expert researchers conducting qualitative research into people’s personal experiences of health and illness. Our mission is to improve understanding of personal health experiences for the benefit of our communities, researchers and the health sector, including healthcare professionals and policy makers.
In particular, DIPEx International aims to:
• Conduct research using the ‘DIPEx’ methodology to ensure a high quality, evidence-based approach to patient experiences.
• Ensure quality and integrity are maintained according to established criteria outlined by DIPEx International Quality Control Manual.
• Supervise, mentor and train other researchers.
• Raise funds for the continuation and expansion of this research.
• Disseminate research findings via our respective websites, as well as through conferences and peer reviewed publications.
• Promote our work through seminars and conferences to our colleagues and professional associations and through the media to members of the public.
DIPEx International has been inspired by the UK-based healthtalk.org which is managed by the DIPEx charity in partnership with Health Experiences Research Group (HERG) at the Nuffield Department of Primary Care Health Sciences at the University of Oxford. The site provides information to the general public that is based on research interviews about personal experiences of health issues.
The original idea for a ‘Database of Individual Patients’ Experiences’ (DIPEx) came from Dr Ann McPherson, an Oxford GP and writer and Dr Andrew Herxheimer, a clinical pharmacologist and Emeritus fellow of the Cochrane collaboration (see more about this on healthtalk.org). Having experienced their own health challenges, both Ann and Andrew found that they’d wanted to know more that their own medical knowledge; they wanted to know what about the experiences of others and impact on quality of life. Founded in 2001, healthtalk.org now reaches millions of people each year and shares information on more than 100 health conditions.
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. The group was subsequently joined by colleagues in the United States, Czech Republic and Norway in 2014-15. See the full list of members. These international groups’ websites span 11 languages and 42 different health conditions. Including the UK healthtalk.org website, there are over 140 different conditions covered, and well over 120 publications in peer-reviewed international journals.
“We were well-informed doctors, but were desperate to know how ordinary people felt, how they chose treatments, what it was like for their relatives."
Dr Ann McPherson (1945-2011)
Co-founder of DIPEx