Patient participation

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Patient participation is a trend that arose in answer to medical paternalism. Informed consent is a process where patients make decisions informed by the advice of medical professionals.

In recent years, the term patient participation has been used in many different contexts. These include, for example, clinical contexts in the form of shared decision-making, or patient-centered care.[1][a] A nuanced definition of which was proposed in 2009 by the president of the Institute for Healthcare Improvement, Donald Berwick: "The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in health care"[3] are concepts closely related to patient participation.

Patient participation is also used when referring to collaborations with patients within health systems and organisations, such as in the context of participatory medicine,[4] or Patient and Public Involvement (PPI). While such approaches are often critiqued for excluding patients from decision-making and agenda-setting opportunities,[5] lived experience leadership is a kind of patient participation in which patients maintain decision-making power about health policy, services, research or education.


With regard to participatory medicine, it has proven difficult to ensure the representativeness of patients. Researchers warn that there are "three different types of representation" which have "possible applications in the context of patient engagement: democratic, statistical, and symbolic."[6] The idea of representativeness in patient participation has had a long history of critique. For example, advocates highlight that claims that patients in participatory roles are not necessarily representative serve to question patients' legitimacy and silence activism.[7] More recent research into 'representativeness' call for the onus to be placed on health professionals to seek out diversity in patient collaborators, rather than on patients to be demonstrably representative.[8]

  1. ^ "Declaration on: Patient-Centered Healthcare" (PDF). International Alliance of Patients' Organizations. 2016. Retrieved 30 June 2016.
  2. ^ Institute of Medicine (2001). "Executive Summary". Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press. p. 6. doi:10.17226/10027. ISBN 978-0-309-07280-9. PMID 25057539.
  3. ^ Berwick DM (July 2009). "What 'patient-centered' should mean: confessions of an extremist". Health Affairs. 28 (4): w555-65. doi:10.1377/hlthaff.28.4.w555. PMID 19454528.
  4. ^ Dyson E (21 October 2009). "Why Participatory Medicine?". Journal of Participatory Medicine. 1 (1): e1. ISSN 2152-7202. Open access icon
  5. ^ Scholz B (5 May 2022). "We have to set the bar higher: towards consumer leadership, beyond engagement or involvement". Australian Health Review. 46 (4): 509–512. doi:10.1071/AH22022. PMID 35508415.
  6. ^ Rowland P, Kumagai AK (June 2018). "Dilemmas of Representation: Patient Engagement in Health Professions Education". Academic Medicine. 93 (6): 869–873. doi:10.1097/ACM.0000000000001971. PMID 29068822.
  7. ^ Happell B, Roper C (January 2006). "The myth of representation: The case for consumer leadership". Australian e-Journal for the Advancement of Mental Health. 5 (3): 177–184. doi:10.5172/jamh.5.3.177.
  8. ^ Scholz B, Kirk L, Warner T, O'Brien L, Kecskes Z, Mitchell I (16 January 2024). "From a Single Voice to Diversity: Reframing 'Representation' in Patient Engagement". Qualitative Health Research. 34 (11): 1007–1018. doi:10.1177/10497323231221674. PMC 11487870. PMID 38229426.


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