The Health Experience Research Group has created a unique database of personal and patient experiences through in-depth qualitative research into over 50 different illnesses and health conditions. The results of our research are published on two websites – www.healthtalkonline.org and www.youthhealthtalk.org which are aimed at patients, their carers, family and friends, doctors, nurses and other health professionals. Our target is to complete at least 100 conditions within the next 5-10 years. the websites, formerly know as www.dipex.org are run by the DIPEx Charity.
For a PDF copy of our annual review, please click here.
The Health Experiences Research Group at the University of Oxford, assessed as a ‘5-star’ research department by the last Research Assessment Exercise (RAE), uses rigorous and systematic research methods to sample, collect and analyse interviews with individuals of all ethnic groups over the age of sixteen. These methods provide a high quality evidence-based approach to patient experience and ensure that a full range of patients’ perspectives are analysed in terms of what someone might expect to experience when diagnosed with a particular condition or illness. More recent studies have focused on broader health and personal issues, from both the individual’s perspective and that of their carers and families. A description of the research methods we use can be found here.
Through the provision of highly reliable – as opposed to partial and anecdotal – data on personal and patient experiences, we believe that these perspectives help people to make informed decisions backed by solid evidence. Users of our websites will find accounts – presented through video, audio and written material – which resonate with their own perspectives and experiences of issues such as reaction to diagnosis, consultation with their doctor, effect on work, social life and relationships, decisions on treatment options and side-effects of treatments. The questions that patients want answered are identified in the interviews with patients and summarised on our websites.
Our studies have focused not only on the patient’s perspective but also on the impact of a illness on those around them. Studies focusing on, for example, carers of people with dementia and parents of children with congenital heart disease are able to provide a significant resource to users in understanding and dealing with illness in the family and/or other closely-knit groups.
The Department of Health has provided strong support to this philosophy. DoH has funded our research into several health conditions – notably young people’s sexual health, epilepsy, pregnancy, cancer screening (breast, cervix and bowel), antenatal and sickle cell and thalassaemia screening, cancer of the prostate, bowel, testes and breast – at a cost exceeding £1.5 million since the project’s inception.
Recent NHS guidance has endorsed evidence-based methodology and its importance to informed patient choice:
“The Database of Informed Patient Choice will be a source of information about patient experience as well as outputs of surveys conducted by the NHS which conform to the standards set by the NHS Advisory Service on Patient Surveys of Experience. The benchmark for NHS Choices’ suppliers in identifying and selecting material is the protocol used by DIPEx, the Database of Individual Patient Experience.”
J A Muir Gray, Director – National Knowledge Service, Chief Knowledge Officer to the NHS
The DIPEx Charity has also been chosen by the Department of Health from over 120 applications to participate in the testing phase of its new Information Accreditation Scheme that will ‘kite mark’ organisations that produce health and social care information.