Dissemmination

Our Methodology

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.

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

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.

Further Reading

Our Methodology

  • Breuning M, Lucius-Hoene G, Burbaum C, Himmel W & Bengel J (2017). Subjektive Krankheitserfahrungen und Patientenorientierung. Das Website-Projekt DIPEx Germany. [Patient experiences and patient centeredness -The website project DIPEx Germany]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz. 60: 453–461. DOI: 10.1007/s00103-017-2524-y.
  • Herxheimer, A., & Ziebland, S. (2004). The DIPEx project: collecting personal experiences of illness and health care. Narrative research in health and illness, 115-131.
  • Herxheimer A & Ziebland S (2003) DIPEx: Fresh insights for medical practice. Editorial. Journal of the Royal Society of Medicine. 96(5): 209-210.
  • Herxheimer, A., McPherson, A., Miller, R., Shepperd, S., Yaphe, J., & Ziebland, S. (2000). Database of patients’ experiences (DIPEx): a multi-media approach to sharing experiences and information. The Lancet, 355(9214), 1540-1543.
  • McPherson A & Herxheimer A (2002) Database of Individual Patients’ Experiences – an update. The British Journal of General Practice. 52(954).
  • McPherson A & Herxheimer A (2001) DIPEx – A Database of Individual Patients’ Experiences. The British Journal of General Practice. 51: 770.
  • Ziebland S (2000) DIPEx: a new resource linking narratives with evidence based information. Medical Sociology News. 26(3): 29-31.
  • Pope C, Ziebland S & Mays N (2000) Qualitative research in health care: analysing qualitative data. BMJ. 320(7227): 114-6. DOI: 10.1136/bmj.320.7227.114.
  • 佐藤(佐久間)りか(2007)、「健康と病いの語りデータベースDIPEx-Japan」の活動について, あいみっく28(3):5-10 (Sato RS (2007) Introducing DIPEx-Japan: Database of Health and Illness Narratives. IMIC. 28(3): 5-10)
  • Wiegersma PA (2013) Digital talking about health. A website for and by patients. Kwaliteit in Zorg. 2: 12-14.
  • Ziebland, S., & McPherson, A. (2006). Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Medical education, 40(5), 405-414.

Evaluation of our websites

  • Breuning, M., Schäfer-Fauth, L., Lucius-Hoene, G., Holmberg, C. (2019). Connecting one’s own illness story to the illness experiences of others on a website – An evaluation study using the think aloud method. Patient Education and Counseling,  (in press), ISSN 0738-3991, https://doi.org/10.1016/j.pec.2019.08.014
  • Lucius-Hoene G, Groth S, Becker A-K, Dvorak F, Breuning M & Himmel W (2013). Wie erleben Patienten die Veröffentlichung ihrer Krankheitserfahrungen im Internet? [What it Means for Patients to Have their Illness Experiences Published in the Internet]. Die Rehabilitation. 52: 196–201. https://doi.org/10.1055/s-0033-1343492
  • Newman, M; Ziebland, S; Barker, K. Patients’ views of a multimedia resource featuring experiences of rheumatoid arthritis: pilot evaluation of healthtalkonline.org Health Informatics Journal 2009 15: 147-159
  • Schierholz H M (2016) Illness narratives in the internet as an information source and support: Evaluation of the website www.krankheitserfahrungen.de. Dissertation. Georg-August-Universität zu Göttingen, Göttingen.
  • Sillence, E. Briggs, P. Herxheimer, A. (2004) Personal experiences matter: what patients think about hypertension information online. He@lth Information on the Internet 42: 3-5.
  • Treloar C, Pienaar K, Dilkes-Frayne E & Fraser S (2017) Lives of Substance: a mixed-method evaluation of a public information website on addiction experiences. Drugs: Education, Prevention and Policy. DOI: 10.1080/09687637.2017.1397602

Further use of our research in teaching, service improvement and more

  • Cheshire J & Ziebland S (2005) Narrative as a resource in accounts of the experience of illness. In: J Coates & J Thornborrow (eds) The Sociolinguistics of Narrative. Amsterdam: John Benjamins. pp. 17 – 40.
  • Coulter A, Locock L, Ziebland Z & Calabrese J (2014) Collecting data on patient experience is not enough: they must be used to improve care. BMJ. 348: g2225. DOI: 10.1136/bmj.g2225.
  • Law S, Ormel I, Loutfi D & Lavis J. (2018) Experience as evidence for healthcare policy. In: G Lucius-Hoene et al (eds.) Narratives in Practice. Oxford: Oxford University Press.
  • Locock, L, Robert, G, Boaz, A, Vougioukalou, S, Shuldham, C, Fielden, J, Ziebland, S, Gager, M, Tollyfield, R. and Pearcey, J (2014) Testing accelerated experience-based co-design: a qualitative study of using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement. NIHR Journals Library.
  • Locock L, Robert G, Boaz A, Vougioukalou S, Shuldham C, Fielden J, Ziebland S, Gager M, Tollyfield R & Pearcey J (2014) Using a national archive of patient experience narratives to promote local patient-centered quality improvement: an ethnographic process evaluation of ‘accelerated’experience-based co-design. Journal of health services research & policy. 19: 200-207. DOI: 10.1177/1355819614531565.
  • Pandhi N; Gaines M; Deci D; Schlesinger M; Culp C; Karp Z; Legler C; Grob R. Broadening medical students’ exposure to the range of illness experiences: A pilot curriculum focused on depression education. Academic Medicine. 95(1):72-76, 2020
  • 佐藤(佐久間)りか(2007)、患者の語りを分析する―DIPExの質的データに基づく学術論文に学ぶ, あいみっく28(1):6-11 (Sato RS(2007) Analyzing Patient Narratives: Reviewing academic papers based on the analyses of DIPEx qualitative data. IMIC 28(1): 6-11)
  • Soar S, Ryan S & Salisbury H (2014) Using patients’ experiences in e-learning design. The Clinical Teacher. 11(2): 80–83. DOI: 10.1111/tct.12166.
  • Snow R, Crocker J, Talbot K, Moore J & Salisbury H (2016) Does hearing the patient perspective improve consultation skills in examinations? An exploratory randomized controlled trial in medical undergraduate education, Medical Teacher,38:12, 1229-1235.
  • Yaphe J, Rigge M, Herxheimer A, McPherson A, Miller R, Shepperd S & Ziebland S (2000) The use of patients’ stories by self-help groups: A survey of voluntary organizations in the UK on the register of the College of Health. Health Expectations. 3(3): 176-81. DOI: 10.1046/j.1369-6513.2000.00092.
  • Ziebland, S., Lavie-Ajayi, M., & Lucius-Hoene, G. (2015). The role of the Internet for people with chronic pain: examples from the DIPEx International Project. British journal of pain, 9(1), 62-64.
  • Ziebland S & Hunt K (2014) Using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy. Journal of Health Services Research & Policy. 19(3): 177–182. DOI: 10.1177/1355819614524187.
  • Ziebland, S., & Herxheimer, A. (2008). How patients’ experiences contribute to decision making: illustrations from DIPEx (personal experiences of health and illness). Journal of nursing management, 16(4), 433-439.

Methodology literature that has inspired our research practice

  • Coyne IT. (1997) Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? Journal of Advanced Nursing. 26: 623-630.
  • Mishler EG. (1991) Research interviewing: context and narrative. Harvard University Press.
  • Pope C, Ziebland S & Mays N. (2000) Qualitative research in health care: Analysing qualitative data. BMJ 320: 114-116.