Centre for Qualitative Research : Featured Resource
DIPEx - Personal Experiences of Health & Illness
DIPEx is an Oxford based charity which produces a unique, award winning website 
giving personal accounts of health and illness. These accounts are in written, audio and video format and aim to give information and support so that people are better informed about the life choices they might need to make when encountering a new health experience, serious illness or health problem. DIPEx is also able to tell health professionals, from the health consumers' perspective, what it is really like to have the health experience or illness, enabling its use within teaching and training settings.
The interviews on the site discuss different aspects of peoples' individual experiences including initial diagnosis (where relevant), symptoms, treatments and treatment choices and the side effects of the particular disease or condition, to talking openly about issues such as living with the condition, the effects on relationships, sex life, telling family and friends and even the most difficult decisions about end of life choices.
On the DIPEx site people's frequently asked questions are answered; which are often very different from the questions that health professionals think people want to ask. We also provide reliable medical information about each experience/condition or illness, links to other organisations, support groups and other useful resource materials and a key word index where you can look up all the interviews, Q&As and information about a particular subject e.g. chemotherapy, diet, pain, etc
Each health experience/disease has its own site or 'module' on the DIPEx website. At the moment the website has published 19 modules and there are 9 in progress including: cancers, heart disease, mental health, screening programmes, chronic pain, pregnancy and maternity issues and rheumatoid arthritis amongst others.
We are also planning a new site just for young people, which will cover teenage cancers, chronic illnesses, sexual health and issues such as bereavement and dealing with a parent who has cancer or another terminal condition. The site will also provide general information such as young peoples rights when speaking to a doctor, how to deal with bullying, have links to the teenage pregnancy unit and other good quality young people's websites.
Each module is based on detailed, qualitative academic research carried out by a DIPEx funded research post at DIPEx Research Group based in the Department of Primary Health Care at Oxford University or in collaboration with DIPEx. The researcher conducts interviews with a purposive sample (approximately 40-50) of patients from a variety of ages, backgrounds and ethnic groups. The participants are recruited through support groups, hospital out-patients clinics and GPs as well as direct volunteers and an advisory panel of experts, clinicians and patients is formed to help and advise the researcher. The interviews are analysed and prepared by the researcher before being passed to the DIPEx charity for the website team to prepare and format them for inclusion into the website.
DIPEx is being used in a number of ways including, use as a pilot teaching tool within the RCN e-learning programme, as a training aide by GP tutors, a teaching tool in communication skills for non-British nurses, information and support in UK wide Cancer Information Centres and has been integrated into numerous PALS groups as an online 'expert patient' resource for patient representatives.
Our aim is publish the 100 main illnesses and experiences/conditions on the site within the next 10 years and to be the UK's primary health information resource. The topics covered will include not only specific illnesses such as cancers, heart conditions, mental health and rare disorders, but issues such as treatment choices for surgery, immunisation, HRT, pregnancy and smoking cessation, in addition to the area for young people mentioned earlier.
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Award Winner DIPEx has been awarded the BUPA Foundation prize for communication 2004. |
The site, which can now be made available on DVD as well as via the internet, is a unique resource in the field of patient and healthcare information and is aimed at several audiences. Our aim is to have the DIPEx DVDs available in all GP surgeries, out-patient clinics, PALS groups and in public libraries to ensure access to all. We are working hard to increase participation and access within BME (Black and Minority Ethnic) groups and our recent presentation to community leaders, project workers and other charities and organisations working in this field, has led to the formation of a Working Party to take this project forward.
Modules available on the site:
prostate cancer lung cancer
colorectal (bowel) cancer breast cancer
testicular cancer cervical cancer
cervical screening epilepsy
heart failure high blood pressure
parents of children with congenital heart disease heart attack
living with dying depression
ovarian cancer antenatal screening
sexual health of young persons chronic pain
carers of people with dementia
Modules in progress:
complex regional pain syndrome breast screening
teenage cancer PSA testing
rheumatoid arthritis Aids and HIV
experiences of pregnancy intensive care
ending a pregnancy due to foetal abnormality
DIPEx and Bournemouth University are collaborating on the production of a module concerning experiences of breastfeeding.
Website Statistics:
The number of 'hits' received on the DIPEx website has increased steadily. We receive approximately 750,000 hits a month on the site and there are now over 300 organisations that have links to the DIPEx website including NHS Direct Online, Macmillan Cancer Relief, CRUK, British Heart Foundation, Cancer BACUP etc., few. The site has over 120 hours of video interviews and over 1200 pages of reliable health information.
