Review
The antecedents, forms and consequences of patient involvement: A narrative review of the literature

https://doi.org/10.1016/j.ijnurstu.2015.09.008Get rights and content

Abstract

Objectives

Despite the centrality of patient involvement in the policy and rhetoric of health care, the theoretical and empirical basis for patient involvement is lacking at the micro-level of practice. The purpose of this narrative review is to provide an overview and synthesize the current empirical research related to patient involvement at the micro-level of health care.

Design

Narrative review.

Data sources

A database search was conducted (in PubMed, CINAHL, Academic Search Premier, EconLit and PsycINFO) for articles published between 1990 and April 2015 in the field of patient involvement in health care. Out of 4238 references, 214 articles were eligible for this review.

Review methods

We analyzed our sample using thematic analysis.

Results

The reviewed articles revealed nine themes for patient involvement, concerning enablers; empowerment, patient education, communication for involvement, staff training, service systems, types; decision making, delivery, development, and consequences of patient involvement. The themes were synthesized into a tentative model that described patient-involvement research.

Conclusions

Our narrative review includes a wide variety of empirical studies on patient involvement in decision-making, delivery and development, and provides an integrative perspective suggesting that patient involvement should be viewed not only as isolated activities, but also as a result of educating and preparing patients, staff and systems.

Introduction

Health care is currently undergoing a paradigmatic shift in which patients are moving from being passive recipient to more autonomous, active, and involved participants (Anderson and Funnell, 2005, Longtin et al., 2010, Nordgren, 2008). The concept of more active patients is attracting increased attention in several fields of health care research. For example, patient involvement is an important component of patient-centered medicine, which is founded on the principle of autonomy (Moira et al., 2003, Sacristán, 2013) and manifests in such concepts and practices as shared decision-making (Makoul and Clayman, 2006, Wills and Holmes-Rovner, 2003), empowerment (Brennan, 1999, Salmon and Hall, 2003), and self-management (Bodenheimer et al., 2002a, Soto et al., 2007). In addition, patient involvement and patients’ right to be involved in care are becoming part of health policies and legislation in the Western world (Simonet, 2011). In this review, we provide an overview and synthesis of the diverse streams of empirical health care research on patient involvement. The review contributes to research and practice in several ways. It supplements and extends previous reviews, as it is the first literature review to cover different manifestations of patient involvement together, and it also provides researchers and health care professionals with an overview of the field. It contains both qualitative studies with small sample articles, as well as large-scale quantitative research. The findings are illustrated in a tentative model that describes and relates the research of patient involvement, including types of involvement, antecedents, and investigated consequences. Based on our analysis of the current literature, we suggest directions for future research.

There are a number of reasons why patient involvement has attracted so much recent attention. The world's demographic structure has changed dramatically and an increasing number of individuals are living with chronic or long-term diseases. The traditional focus on treatment is not sufficient, as people require ongoing support in order to live well with their chronic conditions (Cottam and Leadbeater, 2004). These changes have added to the complexity of health care and necessitated that patients be active and engaged in both disease management and prevention, both in order to increase the capacity of the care system and to improve the care of individual patients. While this rationale is based on changed needs, there are other reasons for increased involvement. For example, Hickey and Kipping (1998) highlighted the demand to provide service that is responsive to the needs and wishes of patients and the patients’ right to be in control and involved in their own care. The former may be viewed as consumerist and is part of a larger trend in the public management discourse in which citizens are increasingly viewed as consumers with the right to determine the value of services and chose services. Today, patient satisfaction surveys are conducted routinely and many health care systems give patients the power to choose their provider on health markets (Nordgren, 2009). This rests on a democratization movement in which citizens should be involved in deciding the content of services and their own care (Hickey and Kipping, 1998). Funnell et al. (1991, p. 38) stressed the rights of patients regarding their own health: “…we recognize the fundamental right of patients to have the power to control their own health care behavior.” Similarly, patient-centered care has been described as a shift away from authoritarian provider care toward care based on patient autonomy (Sacristán, 2013). In addition, failures in health care and research (e.g., Alder Hey organs scandal, Bristol heart scandal and more recently Stafford Hospital scandal) have been important drivers for increased openness, transparency and involvement of patients throughout the health care system.

There is a lack of explicit definitions of patient involvement, and terms such as patient participation, patient engagement and patient involvement are often used interchangeably. In some cases, patient involvement refers to the involvement of patients and the public in the planning and development of health care (e.g., Mockford et al., 2012). In line with Robinson et al. (2008), the present article defines patient involvement as the deliberate activation of patients in their own care or the development of health care. By using this definition, we focus on the involvement of individuals who are participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures, rather than the general public or other stakeholders.

Over the years, a number of theoretical and organizational models have been developed to describe involvement of patients in health care, as well as in other settings. An early example is Arnstein's ladder for citizen participation, which illustrates the level of involvement, from no involvement to symbolic forms of involvement and, finally, high degrees of involvement and control (Arnstein, 1969). In addition, Hickey and Kipping (1998) described the continuum of involvement, ranging from the purely consumerist approach in which the user receives information and explanation but has no real power, to the democratization approach situation where the user has full control. In practical situations, the focus on power may be limiting as it does not acknowledge the process of involvement and the individual variations in knowledge and preferences among both staff and lay people (Greenhalgh et al., 2006, Tritter and McCallum, 2006). Instead, a process-focused and apolitical approach has been suggested (Greenhalgh et al., 2010), and current models for involvement increasingly discuss involvement in terms of mutually beneficial collaborations. For instance, Carman's multilevel framework for patient and family engagement in health care describes the highest level of involvement as partnerships between care providers in direct care, organizational design, and governance and policy making (Carman et al., 2013). Models for involvement in health care delivery that build on such partnerships include the chronic care model (Bodenheimer et al., 2002b) and the partnership model (Courtney et al., 1996). There has also been a growing number of approaches that have addressed patient involvement in different ways and been rooted in different traditions. For example, the active involvement of patients in care is considered an important dimension of the practice of patient-centered care (Epstein and Street, 2011). A different approach is the practice of patient empowerment, which is rooted in the social action movement (Aujoulat et al., 2007) and focuses on the social and psychological process of promoting the ability of people to take control, solve their own problems, and meet their own needs (Gibson et al., 2012).

Although recent decades have seen increased interest in policy and legislation, research, and practice in patient involvement, models and practices in health care remain “fundamentally the same” (Gibson et al., 2012, p. 531). What patient involvement actually means in clinical practice remains unclear to the public, as well as the medical profession, and its benefits are not well understood. A 2012 European Commission report on patient involvement found that “for both practitioners and patients (patient involvement is) often simply equated with medical compliance and following doctors’ orders” (European Commission, 2012). The translation of patient involvement ideals into practice remains a challenge and requires a change in the service that practitioners offer and in organizational practices and competences (Gallouj and Djellal, 2011).

Attention to patient involvement has increased dramatically, as has the empirical research on the subject. Health care can be analytically divided on different levels of analysis (Nelson et al., 2008). For example, patient involvement can be discussed and analyzed on the macro-level (for example, patient involvement in relation to the health system), the meso-level (patient involvement in relation to health organizations and teams or to specific groups of patients) and on the micro-level (patient involvement in relation to individuals and their interaction and practices) Although levels may overlap, this study primarily focuses on the micro level of health care, which we define in line with Nelson et al. (2002) to include patients, clinicians, processes, interactions and recurring patterns in practice. The empirical research of patient involvement on the micro-level is diverse, with studies focusing on specific contexts, diseases and health situations. This diversity makes it difficult to draw firm conclusions based on findings across studies. Therefore, the objective of this narrative review is rather to synthesize and provide an overview of the diverse streams of health care research on patient involvement and their respective research questions.

More specifically, we address the following research question:

  • 1.

    What are the characteristics of empirical research on patient involvement?

  • 2.

    What forms of patient involvement are described in the literature?

  • 3.

    What enablers and barriers to patient involvement are described and studied?

  • 4.

    What types of outcomes are investigated in relation to patient involvement on the micro-level?

Section snippets

Methods

This study combines a narrative review method and thematic synthesis This technique is suitable when considering a range of quantitative and qualitative evidence (Baumeister and Leary, 1997, Mays et al., 2005), and is therefore appropriate here as the present review aims to synthesize and provide an overview of a broad area of research – patient involvement. The subject of patient involvement comprises a wide range of research methodologies, subjects, and topics, which makes statistical

Study characteristics of empirical articles

The empirical sample of 214 articles contained papers from over 50 journals. These were primarily nursing and health care journals, but a number of interdisciplinary journals were also identified. Table 1 presents the characteristics of the included articles.

Overview of the findings

Our analysis enabled us to group the relevant features addressed in the articles into nine major themes. Three of these concern different categories of patient involvement – in decision-making, in delivery of health care, and in development

Discussion

This review of the literature represents an effort to synthesize and provide an overview of the empirical research on the subject of patient involvement. We identified 214 peer-reviewed, published studies on different aspects of patient involvement.

A thematic analysis led to the emergence of nine themes (for the number of references according to theme, see Table 1; also see the reference list). Three major forms of patient involvement were identified: in decision-making, in health care

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