SPECIAL ARTICLE
Patient Participation: Current Knowledge and Applicability to Patient Safety

https://doi.org/10.4065/mcp.2009.0248Get rights and content

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.

Section snippets

LITERATURE SEARCH

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.

DEFINITIONS

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.3 The US National

A NEW ROLE FOR THE PATIENT

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.5 However, in today's definition of health care, the patient is a key player.5 Several factors have contributed to this change. Humanist considerations state that every human being is

Do Patients Want to Participate?

A proportion of patients do not accept the new patient role and refuse to participate in decision making19, 20, 21; 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.19 In a representative sample of the US population, 52% of respondents preferred to delegate decision making to their physician.20 However, other studies found

CAN PATIENTS MODIFY BEHAVIOR OF HEALTH CARE WORKERS?

Evidence shows that patients can be persuasive and substantially modify behavior of health care workers. In an observational study of more than 500 visits to 45 physicians, patients who requested a prescription were almost 3 times more likely to be prescribed a new medication.60 Similarly, those who requested a specialty referral had more than 4 times the odds of receiving a referral. In a randomized trial of patients with major depression, 76% of those who requested an antidepressant received

Lack of Acceptance of the New Role of Health Care Workers

Health care workers' beliefs, attitudes, and behavior can have a major effect on patient participation (Table 3). One of the main obstacles is refusal of health care workers to abandon their traditional role and to delegate power.3, 33 Nurses interviewed by Henderson33 in 1998 conceded unwillingness to share their decision-making power. According to Henderson, many nurses exercise almost absolute power and control over patients and consider them unable to make decisions. This traditional

SOCIAL INFLUENCE ON PATIENT PARTICIPATION

Some obstacles to patient participation are not within the control of either the patient or the health care worker. Patients' desires reflect societal norms and the permissiveness of the health care environment in which they receive treatment.83 If the culture dictates a passive role, a significant proportion of patients is likely not to “want” to participate. Similarly, patient participation is unlikely if it is clear that health care workers are not interested in receiving patient input.

PATIENT PARTICIPATION IN THE MANAGEMENT OF CHRONIC ILLNESS

Patient participation originated from the need to improve the decision-making process and has been successfully extended to other areas of patient care, notably the management of chronic illness.4 In a meta-analysis that evaluated interventions used in disease management programs for patients with chronic illness, patient education and the use of “reminders” (prompts given to patients to perform specific tasks related to the care of their condition) were associated with significant improvement

SUGGESTIONS FOR THE POTENTIAL ROLE OF PATIENT PARTICIPATION TO PREVENT MEDICAL ERRORS

Because patient participation has been shown to improve decision making and treatment of chronic diseases, it is reasonable to speculate that it could also help prevent medical errors,4, 73, 86, 87, 88, 89, 90 although considerably less evidence exists for this potential application. In addition, a major initiative to enlist patients in error prevention may require that the public be reassured of the legitimacy of such an endeavor, which otherwise could be perceived at first glance as a way to

HAND HYGIENE

Health care—associated infection is a major issue in patient safety. Hand hygiene is the primary measure to prevent health care—associated infection and limit the spread of antimicrobial resistance.99, 100, 101, 102 However, adherence by health care workers to good practice is extremely low. Studies in many countries worldwide show that nurses and physicians wash their hands less than half the time.2, 99, 100 Improving hand hygiene adherence has been the major focus of the WHO First Global

PROPOSAL FOR A MODEL OF PATIENT PARTICIPATION TO IMPROVE PATIENT SAFETY

Drawing on the previous review of factors that influence patient participation in decision making and in the treatment of chronic disease, we outline the main elements of a strategy aimed at encouraging patients to participate in improving patient safety (Figure). Given that support from health care workers is crucial for success, the first and most important step is to enlist their full and enthusiastic support. A major educational campaign, using articulate patients when possible, may be

RESEARCH AGENDA

Many aspects of patient participation remain unexplored, particularly concerning patient safety and error prevention. Studies of health care workers' views on patient participation in this area are lacking. There is a need to determine the possibility of redrawing the border between health care worker and patient responsibilities without the former considering patient involvement intrusive and to identify the model of patient-physician relationship best suited to achieve this objective.5 The

LIMITATIONS

The level of evidence for many of the concepts presented in this review is from uncontrolled or observational studies, and few included studies would qualify as a high quality of evidence. Because this review is narrative, some studies may have been missed. A systematic review was not undertaken because of the paucity of methodologically sound research on patient participation in error prevention. Moreover, a narrative review was more appropriate to better illustrate the origins of patient

CONCLUSION

This review suggests that patient participation can improve the decision-making process and the care of chronic illness. However, many patient and health care worker—related factors can influence its efficacy and implementation. Its use to decrease medical errors and to increase staff adherence with optimal practices is promising and deserves further study, but several potential obstacles can be foreseen at patient, health care worker, and health care center levels. Given the controversial

Acknowledgments

We thank all members of the Infection Control Program, University of Geneva Hospitals, in particular Rosemary Sudan for expert editorial assistance, and members of the WHO Global Patient Safety Challenge “Clean Care is Safer Care” core group: John Boyce, MD; Barry Cookson, BDS, MBBS; Nizam Damani, MD; Don Goldmann, MD; Lindsay Grayson, MD; Elaine Larson, RN, PhD; Geeta Mehta, MD; Ziad Memish, MD; Hervé Richet, MD; Manfred Rotter, MD; Syed Sattar, PhD; Hugo Sax, MD; Wing Hong Seto, MD; Andreas

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