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Review article: Biomedical intelligence

Vol. 153 No. 1 (2023)

Patient narratives – a still undervalued resource for healthcare improvement

  • Giovanni Spitale
  • Andrea Glässel
  • Mirriam Tyebally-Fang
  • Corine Mouton Dorey
  • Nikola Biller-Andorno
Cite this as:
Swiss Med Wkly. 2023;153:40022


In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning. 


  1. Pallai E, Tran K. Narrative Health: Using Story to Explore Definitions of Health and Address Bias in Health Care. Perm J. 2019;23(1):18–052. DOI:
  2. Deutsches Netzwerk Gesundheitskompetenz. Erfahrungsberichte im Gesundheitswesen. Dtsch. Netzw. Gesundheitskompetenz DNGK. 2022.
  3. Han MK, Martinez CH, Au DH, Bourbeau J, Boyd CM, Branson R, et al. Meeting the challenge of COPD care delivery in the USA: a multiprovider perspective. Lancet Respir Med. 2016;4(6):473–526. DOI:
  4. JAMA. Narrative Medicine. 2022.
  5. Equator Network. About us | The EQUATOR Network. Equat.-Networkorg. 2022.
  6. O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014 Sep;89(9):1245–51. DOI:
  7. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007 Dec;19(6):349–57. DOI:
  8. Kleinman A. The Illness Narratives: Suffering, Healing, And The Human Condition. New York: Basic Books; 1989.
  9. Porter ME. What is value in health care? N Engl J Med. 2010 Dec;363(26):2477–81. DOI:
  10. Ziebland S, Lavie-Ajayi M, Lucius-Hoene G. The role of the Internet for people with chronic pain: examples from the DIPEx International Project. Br J Pain. 2015 Feb;9(1):62–4. DOI:
  11. Tsianakas V, Maben J, Wiseman T, Robert G, Richardson A, Madden P, et al. Using patients’ experiences to identify priorities for quality improvement in breast cancer care: patient narratives, surveys or both? BMC Health Serv Res. 2012 Aug;12(1):271. DOI:
  12. Brand G, Osborne A, Wise S, Isaac C, Etherton-Beer C. Using MRI art, poetry, photography and patient narratives to bridge clinical and human experiences of stroke recovery. Med Humanit. 2020 Sep;46(3):243–9. DOI:
  13. Locock L, Kirkpatrick S, Brading L, Sturmey G, Cornwell J, Churchill N, et al. Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement. Res Involv Engagem. 2019 Jan;5(1):1. DOI:
  14. Biller-Andorno N, Zeltner T. Individual Responsibility and Community Solidarity—The Swiss Health Care System. N Engl J Med. 2015 Dec;373(23):2193–7. DOI:
  15. Franzini G, Jänicke S, Scheuermann G, et al. On Close and Distant Reading in Digital Humanities: A Survey and Future Challenges. A State-of-the-Art (STAR) Report. 2015.
  16. Moretti F. Distant Reading. 2013.
  17. Spitale G, Biller-Andorno N. TopicTracker: a Python pipeline to search, download and explore PubMed entries. 2021.
  18. Spitale G. PubMed literature on patient narratives 1975–2021. 2022.
  19. Herxheimer A, McPherson A, Miller R, Shepperd S, Yaphe J, Ziebland S. Database of patients’ experiences (DIPEx): a multi-media approach to sharing experiences and information. Lancet. 2000;355(9214):1540–3. DOI:
  20. Ziebland S, McPherson A. Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Med Educ. 2006 ;40(5):405–14. DOI:
  21. Medical Sociology and Health Experiences Research Group (MS & HERG). Researcher’s Handbook – Healthtalk Modules. 2020.
  22. Ziebland S, Herxheimer A. How patients’ experiences contribute to decision making: illustrations from DIPEx (personal experiences of health and illness). J Nurs Manag. 2008;16(4):433–9. DOI:
  23. Drewniak D, Glässel A, Hodel M, Biller-Andorno N. Risks and Benefits of Web-Based Patient Narratives: systematic Review. J Med Internet Res. 2020 ;22(3):e15772. DOI:
  24. Christensen V, Parker K, Cottrell E. Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research. J Clin Transl Sci. 2021 ;5(1):e155. DOI:
  25. Ziebland S, Grob R, Schlesinger M. Polyphonic perspectives on health and care: reflections from two decades of the DIPEx project. J Health Serv Res Policy. 2021 ;26(2):133–40. DOI:
  26. Schaffner C. From “Good” to “Functionally Appropriate”: Assessing Translation Quality. Curr Issues Lang Soc. 1997;4(1):1–5. DOI:
  27. Morse JM. Determining Sample Size. Qual Health Res. 2000;10(1):3–5. DOI:
  28. Marshall MN. Sampling for qualitative research. Fam Pract. 1996 ;13(6):522–5. DOI:
  29. Coyne IT. Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs. 1997;26(3):623–30. DOI:
  30. Hennink MM, Kaiser BN. SAGE Research Methods Foundations. 2020. DOI:
  31. HappyScribe. Security and Data Protection. 2022.
  32. Kuckartz U, Rädiker S. Analyzing qualitative data with MAXQDA: text, audio, and video. 2019. DOI:
  33. Woolf NH, Silver C. Qualitative Analysis Using MAXQDA: The Five-Level QDATM Method; 2017. DOI:
  34. Braun V, Clarke V, Hayfield N, et al. In: Liamputtong P, editor. Handbook of Research Methods in Health Social Sciences. 2018. pp. 1–18. DOI:
  35. Braun V, Clarke V. In: APA handbook of research methods in psychology, Vol 2: Research designs: Quantitative, qualitative, neuropsychological, and biological. Washington, DC, US: American Psychological Association 2012. 57–71. DOI:
  36. Ferguson G, Pérez-Llantada C, Plo R. English as an international language of scientific publication: a study of attitudes. World Engl. 2011;30(1):41–59. DOI:
  37. IBME. Excellence in Patient Care Symposium 2021 – The Swiss Database of Individual Patient Experiences ( 2021.
  38. HON. Our commitment to reliable health and medical information. 2017.
  39. Participatory Science Academy. What is participatory research? 2020.
  40. Spitale G, Biller-Andorno N, Germani F. Concerns Around Opposition to the Green Pass in Italy: Social Listening Analysis by Using a Mixed Methods Approach. J Med Internet Res. 2022 ;24(2):e34385. DOI:
  41. Nascimento L CN. Souza TV de, Oliveira IC dos S, et al. Theoretical saturation in qualitative research: an experience report in interview with schoolchildren. Rev Bras Enferm 2018;71:228–33. DOI:

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