The rigour of our research is the unique feature of the DIPEx approach. We use well-established methods of qualitative research which are based on the pioneering work of our UK partners, the Health Experiences Research Group (HERG) in the Nuffield Department of Primary Care Health Sciences at University of Oxford. The ‘DIPEx’ methodology has been recommended by the UK’s NHS National Knowledge Service as the ‘gold standard’ for research into patient experiences.
A core component of the DIPEx methodology is the commitment to making the findings accessible to broad audiences. Each country has a website for disseminating reliable information, based on our research, about the experience of living with different health conditions (click here for a list of topics covered by our research).
In addition, research findings are published in peer-reviewed, international journals (click here for further reading on the DIPEx methodology and a list of publications).
Researchers
Our researchers are experienced in qualitative research methods and receive accredited training in the DIPEx method. Researchers are supported by an experienced ‘buddy’ and a multidisciplinary Expert Advisory Panel. Primary and support researchers meet regularly during data analysis to ensure data validity and methodological rigour.
Participants and Recruitment
For each project on a given topic or health condition, we conduct face-to-face or online, semi-structured, audio- and video-recorded, narrative interviews with between 30 to 50 people, from as wide a range of backgrounds as possible, concerning their personal experiences of health and illness. With the help of an Expert Advisory Panel we recruit via health professionals, community centres, support groups, consumer organizations and social media. Participants are selected according to ‘maximum variation sampling’, to ensure that a wide range of experiences and views are captured. Interviews typically take place in participants’ homes or workplaces at a time convenient for them. In addition to being able to choose whether to have their interview video or audio-recorded or text only, participants have the option of using a pseudonym to further protect their identities. Interviews generally last 60 – 240 minutes.
Analysis
All interviews are transcribed and the transcripts are returned to participants for review. After any requested content is removed, transcripts are uploaded into qualitative data management software (e.g. Nvivo). Data are organised and analysed using the constant comparative method with ongoing input from our Expert Advisory Panel. The data are further explored for divergent views, to check the robustness of developing themes. Participants are contacted by telephone or email if follow-up is needed.
Outputs
Each country produces a unique website that directly benefits the general public by providing reliable and reassuring information about the experience of living with different health conditions. The themes identified during data analysis inform the writing of detailed web pages (‘topic summaries’ or ‘talking points’) covering every aspect of the journey described by interviewees – from diagnosis and sharing the news to treatment decisions and impact on work and family life. Here, as in the sampling, the website aims to show a maximum variation of experiences. These summaries are illustrated with approximately 250 video, audio and written excerpts from the interviews, and linked to evidence-based health information about the condition in question. Website users also have the option of reading about interviewees’ individual stories.
These resources are used all over the world to train professionals working in the field of health and social care and for service improvement. We also publish our research findings in peer reviewed, international journals and our researchers regularly present at international conferences.
Recently, Dipex International teams from 8 countries collaborated to create a video montage, which you can see here, on Long Covid for use at a World Health Organisation meeting. You can download the full presentation here.
Funding
The source of financing of any research for a DI website must be based on our ethical funding policy which prohibits funding from pharmaceuticals or commercial advertising.
Topics covered by our research
Researchers across DIPEx International have conducted interviews with thousands of patients to understand the lived experience of over 180 different health topics. See below for a list of topics, which can be sorted by health condition or country.
| Health condition | Country |
|---|---|
| 100,000 Genomes Project | UK |
| (High) Policy impact | UK |
| ADHD - young people | Germany |
| Adult Asperger | UK |
| Ageing | Australia, Czech Republic |
| Alport syndrome | UK |
| Alternatives to face to face consultations | UK |
| Amputation | Canada |
| Antenatal screening | UK |
| Antidepressants | UK |
| Arthritis - young people | UK |
| Assisted reproductive technologies and long term health outcomes for women and their children: a data linkage study for England | UK, Spain |
| Asthma | UK |
| Asthma - severe | Australia |
| Atrial Fibrillation | UK |
| Autism | UK |
| Autism - grandparents' experiences | UK |
| Autism - parents' experiences | UK |
| Autism - siblings' experiences | UK |
| Bereavement due to suicide | UK |
| Biobanking | UK |
| Birth choices after caesarean | UK |
| Bone surgery (hip and shoulder) | UK |
| Bowel Disease - chronic inflammatory | Germany |
| Breastfeeding | UK |
| Burns - paediatric | UK |
| Cancer - bladder | UK |
| Cancer - bowel (screening) | Japan, UK |
| Cancer - breast | Canada, Germany, Japan, South Korea, UK, USA |
| Cancer - breast male | UK |
| Cancer - breast screening | UK |
| Cancer - cervical | UK |
| Cancer - cervical screening | UK |
| Cancer - CIN3 (HSIL) | UK |
| Cancer - colorectal | Germany, UK |
| Cancer - colorectal (& sexual dysfunction) | UK |
| Cancer - DCIS | UK |
| Cancer - diagnosis (in England, Denmark & Sweden) | UK |
| Cancer - fatigue | USA |
| Cancer - genomics | USA |
| Cancer - leukaemia | UK |
| Cancer - lung | UK |
| Cancer - Lymphoma | UK |
| Cancer - ovarian | UK |
| Cancer - paediatric | USA |
| Cancer - pancreatic | UK |
| Cancer - penile | UK |
| Cancer - prostate | Germany, Japan, UK |
| Cancer - PSA testing | UK |
| Cancer - risk and genomics | USA |
| Cancer - stomach | South Korea |
| Cancer - teenagers' experiences | UK |
| Cancer - testicular | UK |
| Cancer and Pain Curriculum for Medical Students | USA |
| Chronic illness in young people | UK |
| Cleft palette | UK |
| Clinical trials | Japan, UK |
| Clinical trials - parents' experiences | UK |
| Clinical trials - parents' experiences | UK |
| Clinical trials - young people | UK |
| Congenital Heart Disease - parents' experiences | UK |
| Crohn's disease | Japan |
| Dementia | Japan, Netherlands |
| Dementia - caregivers | Japan, Netherlands, UK, South Korea |
| Depression | Australia, Canada, South Korea |
| Depression - young adults | USA, UK |
| Depression and anxiety - immigrants | Canada |
| Depression Curriculum for Medical Students | USA |
| Diabetes - Type 1 - young people | UK |
| Diabetes - Type 2 | Germany, Israel, Netherlands, South Korea, Spain, UK |
| Domestic Violence | UK |
| Drugs and alcohol - addiction, treatment and recovery | Australia |
| Drugs and alcohol - young people | UK |
| Eating disorders-women | Germany |
| Eating disorders-young people | UK |
| ECT | UK |
| End of Life | UK |
| Epilepsy | Germany, UK |
| Epilepsy - young people | UK |
| Family caregiving | Canada |
| Feverish Illnesses in Children | UK |
| Gout | UK |
| Heart attack | UK |
| Heart failure | UK |
| Heart valve disease - screening | UK |
| Hereditary Disease | Netherlands, UK (Jewish conditions) |
| High Blood Pressure | Spain |
| Hospital care - noise in Intensive Care | UK |
| Hospital care - reducing mortality after ICU transfer to ward | UK |
| Immigrants mental illness | Canada |
| Immunisation - parents | UK |
| Immunisation - parents | UK |
| Infertility | UK |
| Influenza vaccine - parents | UK |
| Influenza vaccine - parents | UK |
| Intensive care - family and friends | UK |
| Intensive care - patients | UK |
| Intensive care- family and friends | UK |
| Jewish health conditions | UK |
| Kidney disease (see also renal disease, end stage - S Asians) | Netherlands, UK |
| Labour and birth - management of early stages of labour | UK |
| Leukemia, genetic: Impact of being informed | UK |
| Life changing injuries | UK |
| Losing a baby at 20-24 weeks of pregnancy | UK |
| Medical Cannabis | Israel |
| Menopause | UK |
| Menopause - early (health practitioners' perspectives) | Australia |
| Menopause - early (women's experiences) | Australia |
| Mental Health and Supported Decision Making: Lived Experience Perspectives | Australia |
| Mental Illness - Black and Minority Ethnic experiences | UK |
| Mental Illness - Black and Minority Ethnic experiences - Carers | UK |
| Miscarriage - late | UK |
| Motor Neurone Disease | UK |
| Multimorbidities | UK |
| Multiple medicines use | Australia |
| Multiple Sclerosis - carers | UK |
| Near miss natal morbidity | UK |
| Neonatal surgery | UK |
| Organ donation | UK |
| Osteoporosis | UK |
| Outcomes-led commissioning | UK |
| Pain - chronic | Germany, Israel, Japan, UK |
| Palliative care - carer experiences | South Korea, Spain, UK |
| Palliative care - patient and carer experiences | Czech Republic, South Korea, Spain, UK |
| Parenting - early | Australia |
| Parkinson's disease | UK |
| Patient and public involvement | UK |
| Patient and public involvement - researchers | UK |
| Polymyalgia Rheumatic | UK |
| Pregnancy | UK |
| Pregnancy - childbirth | Netherlands |
| Pregnancy - ending a pregnancy due to foetal abnormality | UK |
| Pregnancy - perinatal mental health | Canada (pilot) |
| Pregnancy loss (early) (see also losing a baby at 20-24 weeks) | UK |
| Primary care experiences - young people | UK |
| Primary care: Children | Netherlands |
| Psychosis | UK |
| Psychosis - young people | UK |
| Rare Diseases | Netherlands |
| Recovery | UK |
| Recruitment in high needs clinics | USA |
| Rehabilitation - medical | UK, Germany |
| Research - participation and partnerships | UK |
| Research nurses and allied health professionals | UK |
| Rheumatoid arthritis | UK |
| Self-harm - parents | UK |
| Sexual health - young people | UK |
| Sickle cell and beta thalasseamia screening | UK |
| Skin conditions - acne - young people | UK |
| Skin conditions - alopecia - young people | UK |
| Skin conditions - eczema - young people | UK |
| Skin conditions - psoriasis - young people | UK |
| Sleep disorders - older people | UK |
| Smoking cessation | UK |
| Stroke | UK |
| Surgical research studies | UK |
| Training/teaching films (also known as catalyst films) | UK, Canada, USA (*2) |
| Traumatic Brain Injury in Veterans | USA |
| Urinary catheters | UK |
| User generated content for health services | UK |
| Vaccines | UK |
| Vegetative and minimally conscious states | UK |
| Visual Impairment | Netherlands |
| Weight change | UK |
| Weight change - young people | UK |