Our Research

Our Research

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.

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 conditionCountry
100,000 Genomes ProjectUK
(High) Policy impactUK
ADHD - young peopleGermany
Adult AspergerUK
AgeingAustralia, Czech Republic
Alport syndromeUK
Alternatives to face to face consultationsUK
AmputationCanada
Antenatal screeningUK
AntidepressantsUK
Arthritis - young peopleUK
Assisted reproductive technologies and long term health outcomes for women and their children: a data linkage study for EnglandUK, Spain
AsthmaUK
Asthma - severeAustralia
Atrial FibrillationUK
AutismUK
Autism - grandparents' experiencesUK
Autism - parents' experiencesUK
Autism - siblings' experiencesUK
Bereavement due to suicideUK
BiobankingUK
Birth choices after caesareanUK
Bone surgery (hip and shoulder)UK
Bowel Disease - chronic inflammatoryGermany
BreastfeedingUK
Burns - paediatricUK
Cancer - bladderUK
Cancer - bowel (screening)Japan, UK
Cancer - breastCanada, Germany, Japan, South Korea, UK, USA
Cancer - breast maleUK
Cancer - breast screeningUK
Cancer - cervicalUK
Cancer - cervical screeningUK
Cancer - CIN3 (HSIL)UK
Cancer - colorectalGermany, UK
Cancer - colorectal (& sexual dysfunction)UK
Cancer - DCISUK
Cancer - diagnosis (in England, Denmark & Sweden)UK
Cancer - fatigueUSA
Cancer - genomicsUSA
Cancer - leukaemiaUK
Cancer - lungUK
Cancer - LymphomaUK
Cancer - ovarianUK
Cancer - paediatricUSA
Cancer - pancreaticUK
Cancer - penileUK
Cancer - prostateGermany, Japan, UK
Cancer - PSA testingUK
Cancer - risk and genomicsUSA
Cancer - stomachSouth Korea
Cancer - teenagers' experiencesUK
Cancer - testicularUK
Cancer and Pain Curriculum for Medical StudentsUSA
Chronic illness in young peopleUK
Cleft paletteUK
Clinical trialsJapan, UK
Clinical trials - parents' experiencesUK
Clinical trials - parents' experiencesUK
Clinical trials - young peopleUK
Congenital Heart Disease - parents' experiencesUK
Crohn's diseaseJapan
DementiaJapan, Netherlands
Dementia - caregiversJapan, Netherlands, UK, South Korea
DepressionAustralia, Canada, South Korea
Depression - young adultsUSA, UK
Depression and anxiety - immigrantsCanada
Depression Curriculum for Medical StudentsUSA
Diabetes - Type 1 - young peopleUK
Diabetes - Type 2Germany, Israel, Netherlands, South Korea, Spain, UK
Domestic ViolenceUK
Drugs and alcohol - addiction, treatment and recoveryAustralia
Drugs and alcohol - young peopleUK
Eating disorders-womenGermany
Eating disorders-young peopleUK
ECTUK
End of LifeUK
EpilepsyGermany, UK
Epilepsy - young peopleUK
Family caregivingCanada
Feverish Illnesses in ChildrenUK
GoutUK
Heart attackUK
Heart failureUK
Heart valve disease - screeningUK
Hereditary DiseaseNetherlands, UK (Jewish conditions)
High Blood PressureSpain
Hospital care - noise in Intensive CareUK
Hospital care - reducing mortality after ICU transfer to wardUK
Immigrants mental illnessCanada
Immunisation - parentsUK
Immunisation - parentsUK
InfertilityUK
Influenza vaccine - parentsUK
Influenza vaccine - parentsUK
Intensive care - family and friendsUK
Intensive care - patientsUK
Intensive care- family and friendsUK
Jewish health conditionsUK
Kidney disease (see also renal disease, end stage - S Asians)Netherlands, UK
Labour and birth - management of early stages of labourUK
Leukemia, genetic: Impact of being informedUK
Life changing injuriesUK
Losing a baby at 20-24 weeks of pregnancyUK
Medical CannabisIsrael
MenopauseUK
Menopause - early (health practitioners' perspectives)Australia
Menopause - early (women's experiences)Australia
Mental Health and Supported Decision Making: Lived Experience PerspectivesAustralia
Mental Illness - Black and Minority Ethnic experiencesUK
Mental Illness - Black and Minority Ethnic experiences - CarersUK
Miscarriage - lateUK
Motor Neurone DiseaseUK
MultimorbiditiesUK
Multiple medicines useAustralia
Multiple Sclerosis - carersUK
Near miss natal morbidityUK
Neonatal surgeryUK
Organ donationUK
OsteoporosisUK
Outcomes-led commissioningUK
Pain - chronicGermany, Israel, Japan, UK
Palliative care - carer experiences South Korea, Spain, UK
Palliative care - patient and carer experiencesCzech Republic, South Korea, Spain, UK
Parenting - earlyAustralia
Parkinson's diseaseUK
Patient and public involvementUK
Patient and public involvement - researchersUK
Polymyalgia RheumaticUK
PregnancyUK
Pregnancy - childbirthNetherlands
Pregnancy - ending a pregnancy due to foetal abnormalityUK
Pregnancy - perinatal mental healthCanada (pilot)
Pregnancy loss (early) (see also losing a baby at 20-24 weeks)UK
Primary care experiences - young peopleUK
Primary care: ChildrenNetherlands
PsychosisUK
Psychosis - young peopleUK
Rare DiseasesNetherlands
RecoveryUK
Recruitment in high needs clinicsUSA
Rehabilitation - medicalUK, Germany
Research - participation and partnershipsUK
Research nurses and allied health professionalsUK
Rheumatoid arthritisUK
Self-harm - parentsUK
Sexual health - young peopleUK
Sickle cell and beta thalasseamia screeningUK
Skin conditions - acne - young peopleUK
Skin conditions - alopecia - young peopleUK
Skin conditions - eczema - young peopleUK
Skin conditions - psoriasis - young peopleUK
Sleep disorders - older peopleUK
Smoking cessationUK
StrokeUK
Surgical research studiesUK
Training/teaching films (also known as catalyst films)UK, Canada, USA (*2)
Traumatic Brain Injury in VeteransUSA
Urinary cathetersUK
User generated content for health servicesUK
VaccinesUK
Vegetative and minimally conscious statesUK
Visual ImpairmentNetherlands
Weight changeUK
Weight change - young peopleUK