Title: Patient Participation: Current Knowledge and Applicability to Patient Safety
Abstract: Patient participation is increasingly recognized as a key component in the redesign of health care processes and is advocated as a means to improve patient safety. The concept has been successfully applied to various areas of patient care, such as decision making and the management of chronic diseases. We review the origins of patient participation, discuss the published evidence on its efficacy, and summarize the factors influencing its implementation. Patient-related factors, such as acceptance of the new patient role, lack of medical knowledge, lack of confidence, comorbidity, and various sociodemographic parameters, all affect willingness to participate in the health care process. Among health care workers, the acceptance and promotion of patient participation are influenced by other issues, including the desire to maintain control, lack of time, personal beliefs, type of illness, and training in patient-caregiver relationships. Social status, specialty, ethnic origin, and the stakes involved also influence patient and health care worker acceptance. The London Declaration, endorsed by the World Health Organization World Alliance for Patient Safety, calls for a greater role for patients to improve the safety of health care worldwide. Patient participation in hand hygiene promotion among staff to prevent health care—associated infection is discussed as an illustrative example. A conceptual model including key factors that influence participation and invite patients to contribute to error prevention is proposed. Further research is essential to establish key determinants for the success of patient participation in reducing medical errors and in improving patient safety. Patient participation is increasingly recognized as a key component in the redesign of health care processes and is advocated as a means to improve patient safety. The concept has been successfully applied to various areas of patient care, such as decision making and the management of chronic diseases. We review the origins of patient participation, discuss the published evidence on its efficacy, and summarize the factors influencing its implementation. Patient-related factors, such as acceptance of the new patient role, lack of medical knowledge, lack of confidence, comorbidity, and various sociodemographic parameters, all affect willingness to participate in the health care process. Among health care workers, the acceptance and promotion of patient participation are influenced by other issues, including the desire to maintain control, lack of time, personal beliefs, type of illness, and training in patient-caregiver relationships. Social status, specialty, ethnic origin, and the stakes involved also influence patient and health care worker acceptance. The London Declaration, endorsed by the World Health Organization World Alliance for Patient Safety, calls for a greater role for patients to improve the safety of health care worldwide. Patient participation in hand hygiene promotion among staff to prevent health care—associated infection is discussed as an illustrative example. A conceptual model including key factors that influence participation and invite patients to contribute to error prevention is proposed. Further research is essential to establish key determinants for the success of patient participation in reducing medical errors and in improving patient safety. Patient participation is a complex concept and arises from the widespread consumer movement of the 1960s that affirmed the consumer's right to safety, the right to be informed, the right to choose, and the right to be heard.1Kennedy JF Special message to the Congress on protecting the consumer interest.in: Public Papers of the Presidents of the United States. March 15, 1962. 93. US Government Printing Office, Washington, DC1962: 236http://www.jfklink.com/speeches/jfk/publicpapers/1962/jfk93_62.htmlGoogle Scholar During the past few years, patient participation has been increasingly recognized as a key component in the redesign of health care processes and successfully applied to some aspects of patient care, notably the decision-making process and the treatment of chronic illness. Recently, increasing patient participation has been recommended to improve patient safety. The World Health Organization (WHO) World Alliance for Patient Safety is actively highlighting the role that patients and their families could play in the improvement of health care.2World Health Organisation World Alliance for Patient Safety.in: Global Patient Safety Challenge 2005-2006: Clean Care is Safer Care. World Health Organisation, Geneva, Switzerland2005: 1-25http://www.who.int/patientsafety/events/05/GPSC_Launch_ENGLISH_FINAL.pdfGoogle Scholar However, this field of patient participation has not been widely researched thus far. We review the underlying principles and the efficacy of patient participation in decision making and self-treatment of chronic illness, as well as the potential obstacles to implementation. Building on these principles, we develop a conceptual framework for patient participation. Finally, we suggest that patient participation could be useful to improve quality of care and prevent medical errors and propose an agenda for research. A literature search was conducted from January 1966 through December 2008 in English and French of the MEDLINE, Cochrane Library, and Cumulative Index to Nursing and Allied Health Literature databases using the following Medical Subject Headings' keywords in combination: patient participation, patient involvement, patient education, professional-patient relations, decision-making, informed consent, chronic disease, medical errors, infection control, nosocomial infection, and cross infection. Reference lists of relevant articles were hand searched for additional studies. A systematic search of the grey literature was not conducted. Articles retrieved were critically reviewed by the authors and included as appropriate to provide an overview of the literature on the topic. This article is intended to be a comprehensive summary, rather than a systematic review. The concept of patient participation remains poorly defined despite abundant literature. No single definition exists, and various terms such as patient collaboration, patient involvement, partnership, patient empowerment, or patient-centered care are used interchangeably. Furthermore, patient participation can relate to aspects of health care as diverse as decision making, self-medication, self-monitoring, patient education, goal setting, or taking part in physical care.3Cahill J Patient participation—a review of the literature.J Clin Nurs. 1998; 7: 119-128Crossref PubMed Scopus (156) Google Scholar The US National Library of Medicinedefines patient participation as “the involvement of the patient in the decision-making process regarding health issues” (www.ncbi.nlm.nih.gov/mesh). However, this focus on the decision-making process does not include the many and varied aspects of health care in which the patient could participate.4Coulter A Ellins J Patient-Focused Interventions: A Review of the Evidence. The Health Foundation and Picker Institute Europe, London, England2006: 7-20Google Scholar In this review, we make a distinction between participation in decision making and participation in other aspects of care. At the center of patient participation resides a redefinition of the patient role. Historically, in many cultures, the relationship between the patient and the health care worker follows a “paternalist” model (Table 1), and the patient has been traditionally a passive spectator in his or her own healing process.5Emanuel EJ Emanuel LL Four models of the physician-patient relationship.JAMA. 1992; 267: 2221-2226Crossref PubMed Scopus (1655) Google Scholar However, in today's definition of health care, the patient is a key player.5Emanuel EJ Emanuel LL Four models of the physician-patient relationship.JAMA. 1992; 267: 2221-2226Crossref PubMed Scopus (1655) Google Scholar Several factors have contributed to this change. Humanist considerations state that every human being is endowed with will and with a right to self-determination.6Gillon R Medical ethics: four principles plus attention to scope.BMJ. 1994; 309: 184-188Crossref PubMed Scopus (603) Google Scholar By participating in the decision-making process, the patient exercises his or her most fundamental rights. Consumerism also contributed to modification of the patient's role in the treatment process.7Kizer KW Establishing health care performance standards in an era of consumerism.JAMA. 2001; 286: 1213-1217Crossref PubMed Scopus (77) Google Scholar Like any consumer, the patient may demand quality services.4Coulter A Ellins J Patient-Focused Interventions: A Review of the Evidence. The Health Foundation and Picker Institute Europe, London, England2006: 7-20Google Scholar, 8Advisory Commission on Consumer Protection and Quality in the Health Care Industry Consumer bill of rights and responsibilities: executive summary. Published November 1997. Revised July 17, 1998. Washington, DC.http://www.hcqualitycommission.gov/cborr/Date: 1997Google Scholar By continuously evaluating the service and sometimes lodging complaints toward it, the patient-consumer can improve the health care system.9Will consumerism lead to better health [editorial]?.Lancet. 2005; 366: 343Abstract Full Text Full Text PDF PubMed Scopus (17) Google Scholar This new vision of the patient roleis advocated in several official documents of professional medical10ACOG Committee on Quality Improvement and Patient Safety ACOG Committee Opinion #320: partnering with patients to improve safety.Obstet Gynecol. 2005; 106: 1123-1125PubMed Google Scholar, 11General Medical Council Good medical practice: the duties of a doctor registered with the General Medical Council. General Medical Council, London, England2006http://www.gmc-uk.org/guidance/good_medical_practice/GMC_GMP.pdfGoogle Scholar and nursing12Nursing and Midwifery Council The NMC code of professional conduct: standards for conduct, performance and ethics: protecting the public through professional standards. Nursing and Midwifery Council, London2004http://www.nmc-uk.org/aDisplayDocument.aspx?DocumentID=338Google Scholar bodies and in governmental policies in the United States,13Patient Self-Determination Act, 42 USC §§1395cc. 1396a (1994).Google Scholar Australia,14State of Queensland Queensland Health Public Patient's Charter. Queensland Health, Brisbane, Queensland, Australia2002http://www.health.qld.gov.au/qhppc/docs/booklet.pdfGoogle Scholar the Netherlands,15van den Brink-Muinen A van Dulmen SM de Haes HC Visser AP Schellevis FG Bensing JM Has patients' involvement in the decision-making process changed over time?.Health Expect. 2006; 9: 333-342Crossref PubMed Scopus (93) Google Scholar and the United Kingdom.16Department of Health The Patient's Charter. Her Majesty's Stationery Office, London, England1991Google Scholar, 17Department of Health Patient and Public Involvement in the New NHS. The Stationery Office, London, England1999http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Healthservicecirculars/DH_4004176Google Scholar In the “Vienna Recommendations on Health Promoting Hospitals” issued in 1997, the WHO recognized the necessity of encouraging an active and participatory role for patients to improve their well-being and increase the efficiency of the health care system.18National/Regional Health Promoting Hospitals Network Coordinators Vienna Recommendations on Health Promoting Hospitals. World Health Organisation, Geneva, Switzerland1997http://www.euro.who.int/document/IHB/hphviennarecom.pdfGoogle ScholarTABLE 1Paternalist Model of a Patient-Health Care Worker RelationshipData from references 3Cahill J Patient participation—a review of the literature.J Clin Nurs. 1998; 7: 119-128Crossref PubMed Scopus (156) Google Scholar, 4Coulter A Ellins J Patient-Focused Interventions: A Review of the Evidence. The Health Foundation and Picker Institute Europe, London, England2006: 7-20Google Scholar, 5Emanuel EJ Emanuel LL Four models of the physician-patient relationship.JAMA. 1992; 267: 2221-2226Crossref PubMed Scopus (1655) Google Scholar. Only experts (health care workers) are qualified to diagnose and treat diseasesAll decisions rely entirely on the knowledge of the health care workerThe health care worker is the guardian of the patient's interest and must respect the principle of beneficenceThe patient is a passive recipient of care Open table in a new tab A proportion of patients do not accept the new patient role and refuse to participate in decision making19Guadagnoli E Ward P Patient participation in decision-making.Soc Sci Med. 1998; 47: 329-339Crossref PubMed Scopus (629) Google Scholar, 20Levinson W Kao A Kuby A Thisted RA Not all patients want to participate in decision making: a national study of public preferences.J Gen Intern Med. 2005; 20: 531-535Crossref PubMed Scopus (836) Google Scholar, 21Strull WM Lo B Charles G Do patients want to participate in medical decision making?.JAMA. 1984; 252: 2990-2994Crossref PubMed Scopus (632) Google Scholar; however, studies diverge as to the exact proportion. In a literature review, it ranged from 48% for women recently diagnosed with breast cancer to 80% for patients with cancer who had been offered an experimental treatment.19Guadagnoli E Ward P Patient participation in decision-making.Soc Sci Med. 1998; 47: 329-339Crossref PubMed Scopus (629) Google Scholar In a representative sample of the US population, 52% of respondents preferred to delegate decision making to their physician.20Levinson W Kao A Kuby A Thisted RA Not all patients want to participate in decision making: a national study of public preferences.J Gen Intern Med. 2005; 20: 531-535Crossref PubMed Scopus (836) Google Scholar However, other studies found a much stronger preference of patients to participate. Among 824 patients waiting to see a general practitioner, 86% expressed the desire to determine the choice of treatment in conjunction with their physician and to establish a therapeutic partnership.22Little P Everitt H Williamson I et al.Preferences of patients for patient centred approach to consultation in primary care: observational study.BMJ. 2001; 322: 468-472Crossref PubMed Google Scholar From these and other studies,23Thompson SC Pitts JS Schwankovsky L Preferences for involvement in medical decision-making: situational and demographic influences.Patient Educ Couns. 1993; 22: 133-140Abstract Full Text PDF PubMed Scopus (131) Google Scholar, 24Mansell D Poses RM Kazis L Duefield CA Clinical factors that influence patients' desire for participation in decisions about illness.Arch Intern Med. 2000; 160: 2991-2996Crossref PubMed Scopus (88) Google Scholar it can be concluded that various factors influence the patient's desire to participate in decision making. Besides rejection of the new patient role, one of the main obstacles to patient participation is low health literacy and lack of knowledge of the subject (Table 2).4Coulter A Ellins J Patient-Focused Interventions: A Review of the Evidence. The Health Foundation and Picker Institute Europe, London, England2006: 7-20Google Scholar, 25Katz MG Jacobson TA Veledar E Kripalani S Patient literacy and question-asking behavior during the medical encounter: a mixed-methods analysis.J Gen Intern Med. 2007 Jun; 22 (Epub 2007 Apr 12.): 782-786Crossref PubMed Scopus (203) Google Scholar Patients are more likely to be involved in decisions that do not require medical knowledge than those that require clinical expertise.23Thompson SC Pitts JS Schwankovsky L Preferences for involvement in medical decision-making: situational and demographic influences.Patient Educ Couns. 1993; 22: 133-140Abstract Full Text PDF PubMed Scopus (131) Google Scholar Knowledge also confers confidence; patients are more likely to trust their capacity to make decisions when thoroughly informed.33Henderson S Power imbalance between nurses and patients: a potential inhibitor of partnership in care.J Clin Nurs. 2003; 12: 501-508Crossref PubMed Scopus (155) Google Scholar For example, in a randomized controlled study, participation in therapy for ulcer disease improved with a 20-minute educational session.26Greenfield S Kaplan S Ware Jr, JE Expanding patient involvement in care: effects on patient outcomes.Ann Intern Med. 1985; 102: 520-528Crossref PubMed Scopus (1206) Google Scholar Sessions provided patients with the knowledge necessary for their treatment and encouraged them to actively participate in decision making. They also led to an increased involvement in the patient-physician interaction and fewer limitations imposed by the disease on patients' functional ability. Moreover, patient participation depends on the type of decision to be made. Certain situations (referred to as “problem-solving situations”35Kraetschmer N Sharpe N Urowitz S Deber RB How does trust affect patient preferences for participation in decision-making?.Health Expect. 2004; 7: 317-326Crossref PubMed Scopus (213) Google Scholar) do not present themselves well to patient participation. For example, most patients are not qualified (nor do they desire) to determine whether a radiograph reveals a fracture. In contrast, most “decision-making situations” require an analysis of the value (“utility” in economic parlance) of potential outcomes to the individual, something only the patient can determine, eg, choosing between mastectomy and chemotherapy for breast cancer. Patients instinctively make the distinction between these 2 types of decisions and prefer to be involved in the latter rather than the former.23Thompson SC Pitts JS Schwankovsky L Preferences for involvement in medical decision-making: situational and demographic influences.Patient Educ Couns. 1993; 22: 133-140Abstract Full Text PDF PubMed Scopus (131) Google Scholar The stakes also influence participation. Most patients want to participate in major decision making (eg, whether to undergo coronary bypass) but are less concerned about minor decisions (eg, prescription for bed rest).24Mansell D Poses RM Kazis L Duefield CA Clinical factors that influence patients' desire for participation in decisions about illness.Arch Intern Med. 2000; 160: 2991-2996Crossref PubMed Scopus (88) Google ScholarTABLE 2Factors That Influence Patient Participation Acceptance of new patient role19Guadagnoli E Ward P Patient participation in decision-making.Soc Sci Med. 1998; 47: 329-339Crossref PubMed Scopus (629) Google Scholar, 20Levinson W Kao A Kuby A Thisted RA Not all patients want to participate in decision making: a national study of public preferences.J Gen Intern Med. 2005; 20: 531-535Crossref PubMed Scopus (836) Google Scholar, 21Strull WM Lo B Charles G Do patients want to participate in medical decision making?.JAMA. 1984; 252: 2990-2994Crossref PubMed Scopus (632) Google ScholarLevel of health literacy and extent of knowledge4Coulter A Ellins J Patient-Focused Interventions: A Review of the Evidence. 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