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. The results of our studies are published in peer-reviewed, international journals. The rigour of our research is the unique feature of the DIPEx approach to health experiences.
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 module we conduct face-to-face or online, semi-structured, audio- and/or 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 recorded in video or audio, participants have the option of using a pseudonym to further protect their identities. Interviews generally last 60 – 240 minutes.
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, MAXQDA, Atlas.ti, a.o.). Data are organized and analyzed 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.
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.
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.