Sue Ziebland*, University of Oxford, Oxford, United Kingdom
Graham Shaw, DIPEx, Oxford, United Kingdom

Track: Practice
Presentation Topic: Building virtual communities and social networking applications for patients and consumers
Presentation Type: Oral presentation
Submission Type: Single Presentation

Building: LKSC Conference Center Stanford
Room: Lower Auditorium 120
Date: 2011-09-17 04:30 PM – 06:00 PM
Last modified: 2011-08-12

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The DIPEx Charity produces two award-winning websites, and, which present people's lived experiences of health conditions, together with other evidence-based health information. The sites feature over 60 health conditions, with almost 3 million hits and 125,000+ visits monthly.
The personal health experiences are based on in-depth qualitative research undertaken by the Health Experiences Research Group at the Department of Primary Health Care, University of Oxford. For each project we interview 40-50 people, typically in their own homes, about their experiences of a particular condition, write 25-30 summaries on the most important issues that emerge from the interviews and illustrate these with around 250-300 audio and video clips for each condition. A complete list of the conditions we have covered to date on Healthtalkonline is shown at
In addition to our main website, Healthtalkonline, we have also developed a website – Youthhealthtalk – which focuses on the experiences of young people aged 15-25 years old. This website includes studies of young people’s experiences of illness (including epilepsy, diabetes, cancer, sexual health), depression and health/weight problems. Youthhealthtalk gives voice to young people from different cultural and social backgrounds across the UK and provides a safe and anonymous place to learn how others cope. Youthhealthtalk challenges stigma and isolation experienced by young people. The websites are used increasingly to train health and social care professionals. We supply video and audio clips on a weekly basis to trainers seeking to ensure that their courses include the authentic voice of patients. We are now engaged in providing our own e-learning programmes with focus on patient experience (see
A major new development in the last year has been the creation of ‘sister’ websites which use social networking techniques to encourage our visitors to post their own experiences on the web, create blogs, join discussion groups and become part of a community facing similar challenges to their own. These websites – and – have already begun to see increasing numbers of registered members who wish to share and listen to health experiences.
DIPEx has worked with an increasing number of partners overseas to develop an international focus on the importance of people’s health experiences. To date, DIPEx partners organizations have been established in Germany, Korea, Japan, Spain, Israel, The Netherlands and Australia.
DIPEx has pioneered a greater understanding of what it’s like to experience health issues. Patients, carers, friends, family and health professionals find invaluable the direct and uncompromising first-hand accounts of health issues in the form of video or audio clips and written transcripts. For new patients with no prior knowledge of a recently diagnosed condition, and provide a lifeline to other people’s lived experiences. Going online to watch and listen to real people discuss their own health journeys can provide precious insights and help to alleviate fears. This is a unique resource which will have an enormous impact on future health care delivery.
The presentation will look at the level and cost of resources to create meaningful data on personal health experiences which are significant. Additionally, measuring outcomes is challenging when presenting web-based information to a large audience.

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