Social Theory & Health

, Volume 17, Issue 3, pp 307–330 | Cite as

Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis

  • Eva Marie CastroEmail author
  • Tine Van Regenmortel
  • Walter Sermeus
  • Kris Vanhaecht
Original Article


Although the concept of experiential expertise is relatively new in modern health care services, policy, and research, it has profound implications for improving participation in healthcare. The absence of theoretical and conceptual clarity has led to poor understanding and miscommunication among researchers, health practitioners, and policy makers. The aim of this article is to present a concept analysis of experiential expertise and to explain its defining characteristics, applicability, and significance. A combination of Rodger’s evolutionary method combined with Schwartz-Barcott and Kim’s hybrid model was selected as a method for the analysis of the experiential expertise concept. This method combines theoretical (24 definitions) with empirical data analysis (17 interviews). Antecedents, attributes, and consequences are determined. A comprehensive definition is provided, and the interrelatedness between experiential expertise and related concepts was mapped. Experiential expertise is a complex process exceeding the boundaries of individual experiences. Its availability cannot be taken for granted. Using experiential expertise in health care can facilitate patient empowerment leading to improved quality of life and health care. The present study offers clarity by proposing a conceptual model that can assist researchers, policy makers, and health care professionals in facilitating implementations in practice.


Experiential knowledge Experiential expertise Co-production Concept analysis 


  1. Abel, K., and C. Browner. 1998. Selective compliance with biomedical authority and the uses of experiential knowledge. In Pragmatic women and body politics, ed. M. Lock, and P. Kaufert. Cambridge: Cambridge University Press.Google Scholar
  2. Batalden, M., et al. 2017. Coproduction of healthcare service. BMC Quality & Safety. Scholar
  3. Blume, S. 2017. In search of experiential knowledge. Innovation: The European Journal of Social Science Research 30 (1): 91–103. Scholar
  4. Boevink, W. 2006. Stories of recovery. Working together towards experiential knowledge in mental health care. Utrecht: Trimbos-instituut.Google Scholar
  5. Boevink, W. 2012. HEE: towards recovery, empowerment and experiential expertise of users of psychiatric services. In Empowerment, lifelong learning and recovery in mental health: towards a new paradigm, ed. P. Rian, S. Ramon, and T. Greacen, 36–50. New York: Palgrave.CrossRefGoogle Scholar
  6. Boevink, W. 2017. Hee! Over Herstel, Empowerment en Ervaringsdeskundigheid in de psychiatrie. Utrecht: Trimbos Instituut.Google Scholar
  7. Boevink, W., et al. 2016. ‘A user-developed, user run recovery programme for people with severe mental illness: A randomised control trial’. Psychosis 2439: 1–14. Scholar
  8. Boivin, A. 2014. What are the key ingredients for effective public involvement in health care improvement and policy decisions? A randomized trial process evaluation. The Milbank quarterly 92 (2): 319–350. Scholar
  9. Borkman, T. 1976. Experiential Knowledge: A analysis of self-help groups. Social Service Review 50 (3): 445–456.CrossRefGoogle Scholar
  10. Bovenberg, F., G. Wilrycx, and G. Francken. 2011. Inzetten van ervaringsdeskundigheid [The enablement of expertise by experience]. Sociale Psychiatrie 29: 21–28.Google Scholar
  11. Burda, M.H.F., et al. 2012. Harvesting experiential expertise to support safe driving for people with diabetes mellitus: A qualitative study evaluated by peers in a survey. Patient 5 (4): 251–264. Scholar
  12. Burda, M.H.F., et al. 2016. Collecting and validating experiential expertise is doable but poses methodological challenges. Journal of Clinical Epidemiology 72: 10–15. Scholar
  13. Caron-Flinterman, J.F., J.E.W. Broerse, and J.F.G. Bunders. 2005. ‘The experiential knowledge of patients: A new resource for biomedical research?’. Social Science & Medicine (1982) 60 (11): 2575–2584. Scholar
  14. Casman, M.-T., et al. 2010. Experts by experience in poverty and in social exclusion. Antwerp-Apeldoorn: Garant.Google Scholar
  15. Castro, E.M., T. Van Regenmortel, K. Vanhaecht, W. Sermeus, and A. Van Hecke. 2016. Patient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review. Patient Education and Counseling 99 (12): 1923–1939.CrossRefGoogle Scholar
  16. Castro, E.M., et al. 2017. ‘Co-design for implementing patient participation in hospital services: A discussion paper. Patient Education and Counseling. Scholar
  17. Castro, E.M.Van, T. Regenmortel, C. Van Wanseele, W. Sermeus, and K. Vanhaecht. 2018. Participation and healthcare: a survey investigating current and desired levels of collaboration between patient organizations and hospitals. Journal of Social Intervention: Theory and Practice 27 (4): 4–28.Google Scholar
  18. Civan, A., et al. 2009. ‘Locating patient expertise in everyday life’. GROUP ACM SIGCHI Int Conf Support Group Work., pp. 291–300.
  19. Crawford, M.J., et al. 2002. ‘Systematic review of involving patients in the planning and development of health care. BMJ Clinical Research 325: 1263.CrossRefGoogle Scholar
  20. Currana, T., R. Sayers, and B. Percy-Smith. 2015. Leadership as experts by experience in professional education. Procedia - Social and Behavioral Sciences 186: 624–629.CrossRefGoogle Scholar
  21. de Jonge, M. 1994. Beroep cliëntdeskundige. Een nieuwe ster aan het firmament van de gezondheidszorg. Medisch Contact 49: 1627–1628.Google Scholar
  22. Deegan, P. 1993. Recovering our sense of value after being labelled mentally ill. Journal of Psychosocial Nursing 31 (4): 7–11.Google Scholar
  23. Dreyfus, S., and H. Dreyfus. 1980. A five-stage model of the mental activitities involved in directed skill acquisition. Berkeley.Google Scholar
  24. Erp, N. D. Van Boertien, S. Van Rooijen. 2015. ‘Basiscurriculum Ervaringsdeskundigheid. Bouwstenen voor onderwijs en opleidingen voor ervaringsdeskundigen [Basic Curriculum experiential expertise Foundation for education and training for experience experts].’, p. 146.
  25. Frampton, P. et al. 2008. Patient-centered care improvement guide. Derby. Accessed 22 Nov 2015.
  26. Gielen, P., J. Godemont, K. Matthijs, and A. Vandermeulen. 2010. Zelfhulpgroepen. Samenwerken aan welzijn en gezondheid. Leuven: Lannoo Campus.Google Scholar
  27. Goertz, Gary. 2006. Social science concepts: A user’s guide. Princeton and Oxford: Princeton University Press.Google Scholar
  28. Greenhalgh, T. 2005. Effectiveness and efficiency of search methods in systematic reviews of complex evidence: Audit of primary sources. BMJ 331 (7524): 1064–1065. Scholar
  29. Karbouniaris, S, and E. Brettschneider, E. 2008. Inzet en waarde van ervaringsdeskundigheid in de GGZ [Enablement and value of expertise by experience in mental health care]. Utrecht.Google Scholar
  30. Knooren, J. 2010. Training psychiatric clients to become experts by experience. European Journal of Social Education 16: 201–208.Google Scholar
  31. Korevaar, L., and J. Droës. 2011. Handboek rehabilitatie voor zorg en welzijn Handbook rehabilitation for care and well-being]. Bussum: Coutinho.Google Scholar
  32. Lam, A. 2000. ‘Tacit knowledge, organizational learning and societal institutions: An integrated framework. Organization Studies 21 (3): 487–513. Scholar
  33. Malfait, S., K. Eeckloo, and A. Van Hecke. 2017. The influence of nurses’ demographics on patient participation in hospitals: A cross-sectional study. Worldviews on Evidence-Based Nursing 14 (6): 455–462.CrossRefGoogle Scholar
  34. Mclaughlin, H. 2009. ‘What’ s in a name : “Client”, “patient”, “customer”, “consumer”, “expert by experience”, “service user”—what’ s next ? The British Journal of Social Work 39 (6): 1101–11147.CrossRefGoogle Scholar
  35. Miaskiewicz, T., and K.A. Kozar. 2011. Personas and user-centered design: how can personas benefit product design processes. Design Studies 32: 417–430.CrossRefGoogle Scholar
  36. Mockford, C., et al. 2012. ‘The impact of patient and public involvement on UK NHS health care: A systematic review. International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care/ISQua 24 (1): 28–38. Scholar
  37. Nickel, S., A. Trojan, and C. Kofahl. 2016. Involving self-help groups in health-care institutions: the patients’ contribution to and their view of “self-help friendliness” as an approach to implement quality criteria of sustainable co-operation. Health Expectations. Scholar
  38. Plooy, A. 2007. Ervaringsdeskundigen in de hulpverlening—bruggenbouwers of bondgenoten! [Experience Experts in counseling—bridge builders or allies!]. Tijdschrift voor Rehabilitatie 16 (2): 14–21.Google Scholar
  39. Polit, D., and C. Beck. 2012. Nursing Research: Generating and assessing evidence for nursing practice, vol. 9. Philadelphia: Wolters Kluwer/Lippincott/Williams & Wilkins Health.Google Scholar
  40. Posthouwer, M., and H. Timmer. 2013. Een ervaring rijker [A new experience]. Amsterdam: SWP.Google Scholar
  41. Repper, J., and T. Carter. 2011. A review of the literature on peer support in mental health services. Journal of Mental Health 20 (4): 392–411. Scholar
  42. Rietbergen, C., E. Mentink, and L. Verkuyl. 1998. Inzet van ervaringsdeskundigheid bij de (re)integratie van arbeidsgehandicapten [Deployment of experiential expertise in the (re) integration of disabled people]. Utrecht.Google Scholar
  43. Rodgers, B., and K. Knafl. 2000. Concept development in nursing: foundations, technqiues, and applications. Amsterdam: Elsevier.Google Scholar
  44. Roets, G., et al. 2012. Pawns or pioneers? the logic of user participation in anti-poverty policy-making in public policy units in belgium. Social Policy and Administration 46 (7): 807–822. Scholar
  45. Ruis, J., D. Polhuis, and I. de Hoop. 2012. Ervaring is de beste leermeester. De meerwaarde en positie van ervaringsdeskundigen. Vakblad Sociale Psychiatrie 31: 43–46.Google Scholar
  46. Schwartz-Barcott, D., and S. Kim. 2000. An expansion and elaboration of the hybrid model of concept development. In Concept development in nursing: foundations, techniques, and applications, ed. B.L. Rodgers, and K.A. Knafl. Philadelphia: Saunders.Google Scholar
  47. Scourfield, P. 2010. A critical reflection on the involvement of “experts by experience” in inspections. British Journal of Social Work 40 (6): 1890–1907. Scholar
  48. Sharma, A.E., et al. 2017. ‘The impact of patient advisors on healthcare outcomes: A systematic review. BMC Health Services Research 17 (1): 7. Scholar
  49. Solbjør, M., and A. Steinsbekk. 2011. User involvement in hospital wards: Professionals negotiating user knowledge. A qualitative study. Patient Education and Counseling 85 (2): 144–149. Scholar
  50. Spiesschaert, F., D. Trimbos, and M. Vangertruyden. 2009. De methodiek Ervaringsdeskundige in Armoede en Sociale Uitsluiting. Kennis uit het werkveld. Berchem: De Link vzw.Google Scholar
  51. Tambuyzer, E., G. Pieters, and C. Van Audenhove. 2014. Patient involvement in mental health care: One size does not fit all. Health Expectations 17 (1): 138–150. Scholar
  52. Thompson, J., et al. 2012. Credibility and the “professionalized” lay expert: Reflections on the dilemmas and opportunities of public involvement in health research. Health: An Interdisciplinary Journal for the Social Study of Health Illness and Medicine 16 (6): 602–618. Scholar
  53. Timmer, H., and A. Plooy. 2009. Weten over leven, ervaringskennis van mensen met langdurende psychische aandoeningen [Knowing about life, experience knowledge of people with long-term psychiatric disorders]. Amsterdam: SWP.Google Scholar
  54. Tritter, J.Q. 2009. ‘Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations : An International Journal of Public Participation in Health Care and Health Policy 12 (3): 275–287. Scholar
  55. Utschakowski, J. (2017) Foundations and consequences of experiential knowledge.Google Scholar
  56. Vandenbempt, K., and B. Demeyer. 2003. Beroepsprofiel. Ervaringsdeskundige in de armoede en sociale uitsluiting. Leuven: Garant Publishers.Google Scholar
  57. van Bakel, M. et al. 2013. Ervaringsdeskundigheid Beroepscompentieprofiel [Experiential Expertise Competency Profile]. Utrecht/Amersfoort.
  58. van Erp, N., M. van Wezep, A. Meijer, H. Henkens, and S. van Rooijen. 2011. Werk en opleiding voor ervaringsdeskundigen: Transitie-experiment Eindhoven. Utrecht: Trimbosinstituut.Google Scholar
  59. Van Erp, N., et al. (no date) Werk en opleiding voor ervaringsdeskundigen [Work and training for experience experts]. Eindhoven.Google Scholar
  60. van Haaster, H., and Y. Koster-Dreese. 2005. Ervaren en weten [Experience and Knowledge]. Utrecht: Jan Van Arkel.Google Scholar
  61. van Haaster, H. et al. 2013. Kaderdocument ervaringsdeskundigheid [Framework Experiential expertise]. Utrecht.Google Scholar
  62. Van Regenmortel, T. 2009. Koningin Fabiolafonds voor de Geestelijke Gezondheid, pp. 1–8.Google Scholar
  63. Van Regenmortel, T. 2011. Ervaringsdeskundigheid in de geestelijke gezondheidszorg met betrekking tot werk. [Experiential expertise in mental health related to work]. Welzijnsgids (Gezondheidszorg, Geestelijke gezondheidszorg) 29: 1–22.Google Scholar
  64. Verbrugge, C.J.J.M., and P.J.C.M. Embregts. 2013. Een opleiding ervaringsdeskundigheid voor mensen met een verstandelijke beperking [Training experiential expertise for people with intellectual disabilities]. Tilburg.Google Scholar
  65. World Health Organisation. 2015. WHO global strategy on people-centred and integrated health services. Geneva: World Health Organisation.

Copyright information

© Springer Nature Limited 2018

Authors and Affiliations

  • Eva Marie Castro
    • 1
    Email author
  • Tine Van Regenmortel
    • 2
    • 3
  • Walter Sermeus
    • 4
  • Kris Vanhaecht
    • 4
    • 5
  1. 1.Faculty of Social SciencesKU LeuvenLouvainBelgium
  2. 2.Faculty of Social Sciences - HIVAUniversity of LeuvenLouvainBelgium
  3. 3.Tilburg School of Social and Behavioral SciencesTilburg University, TranzoTilburgThe Netherlands
  4. 4.Department of Public Health & Primary Care, Leuven Institute for Healthcare PolicyUniversity of LeuvenLouvainBelgium
  5. 5.Department of Quality ManagementUniversity Hospitals LeuvenLouvainBelgium

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