Abstract

Summary:
Objective: Despite the growing acknowledgement of the value of engaging patients in their health care, the term “patient engagement” is at risk of becoming nothing more than a “hot buzz phrase,” as it lacks a shared definition and, consequently, shared guidelines for interventions. The aim of this study is to identify the main conceptualizations associated with the expression “patient engagement” within the current academic literature. In particular we highlight different disciplinary points of view and changes in its conceptualizations across the last 12 years.
Methods: Five electronic databases were searched from 2002 to 2013 with no language restrictions (included MEDLINE; PsychINFO; CINAHL;Web of Science; and SCOPUS). A qualitative software-based thematic analysis was performed on papers dealing with the concept of patient engagement retrieved by a systematic review of the literature.
Key Findings: Searches yielded 1020 articles, of which 259 studies fulfilled the inclusion criteria. The conceptualization of patient engagement is still vague and has changed over time, thus offering a fragmented and partial vision of this phenomenon. The current literature focuses alternatively on different and singular aspects of the patient engagement phenomenon while missing the whole picture of the elements that may hinder or facilitate patient engagement.
Conclusions: These results underline the urgency for a deeper understanding of what patient engagement means in order to develop knowledge useful for innovation both in clinical practice and health policy agendas.
Keywords: Patient engagement, patient-centered care, systematic review, software based review.
Citation: Barello S, Graffigna G, Vegni E, Bosio AC. The challenges of conceptualizing patient engagement in health care: a lexicographic literature review. J Participat Med. 2014 Jun 11; 6:e9.
Published: June 11, 2014.
Competing Interests: The authors have declared that no competing interests exist.

Background

In recent years, patient engagement has come to be considered the cornerstone of the health care system revolution for its potential impact on health outcomes and on reducing health care costs.[1] The growing attention to this concept is demonstrated by the increasing number of both academic and managerial publications on this issue in the last ten years.[2]

While the number of people all over the world with chronic disease is growing significantly, health care systems have responded to the call for increased patient engagement. This trend is in line with suggestions from scientific debates highlighting how patient satisfaction and quality outcomes are improved when patients become actively engaged in their own health care.[3][4] Medical practice has been gradually increasing its focus during the past decade from a more authoritative/paternal model to a more collaborative/consumer model. This shift often calls upon patients as consumers to become more active in their own care decisions. The increased interests towards the engagement of patients in their health care are also the results of managerial and economic considerations: global economic crisis and the limited resources currently available are affecting the possibility of delivering high quality clinical services and are forcing health care organizations to find a virtuous balance between the decline of resources and increased costs of care.[5][6][7][8] Making patients active players in the delivery of care is considered a possible solution to reduce health care costs: a more active and literate patient, able to engage in the management of his/her care might help reduce doctor shopping, the length of hospitalizations, and poor clinical outcomes. [2][9][10]

The establishment of patients’ power to advocate for their own health and care plans is another pivotal factor that attracted health care policy planners and managers as well as the patient advocacy groups to achieve patient engagement as a key part of the contemporary health care delivery systems.[11]

However, although the concept of patient engagement promises to deliver significant value for health care providers, patients and other health care stakeholders, many gaps still exist for patient engagement to make an impact on the Western health care systems at large. That is why the health care field could benefit from an evidence-based analysis of the term ‘patient engagement.’ ‘Patient engagement’ is often used as an umbrella term to cover a multiplicity of interactions that patients have with their health care systems. Terms such as ‘patient empowerment,’ ‘patient participation’ and ‘patient involvement’ are sometimes substituted for the term ‘patient engagement.’ Evidence-based elucidation of this term could facilitate additional theoretical and empirical understanding of concepts associated with ‘patient engagement.’

Academic literature relating to patient engagement is wide and multi-faceted. It includes quantitative and qualitative empirical studies, theoretical and discussion papers, and draws on theoretical developments in various fields and disciplines, such as psychology, medicine, education, communication studies, and nursing. Acknowledging this diversity, we sought to capture and critically analyze what today is acknowledged as patient engagement and its perceived role in the process of care.

In order to systematize conceptualizations and definitions of patient engagement currently present in the literature, this study reviews academic papers that attempted to define this concept. We aimed to:

1. Underline differences in the conceptual definitions related to the disciplinary domains in which the term patient engagement is used.
2. Detect changes in patient engagement definitions during the last 12 years.

Methods

Search strategy and inclusion criteria

Our search covered biomedical databases and other sources from 2002 to 2013: PubMed/Ovid MEDLINE; Ovid PsycInfo; CINAHL, SCOPUS,; Web of Science The search string was formulated as patient engagement and included only peer-reviewed articles published in English in the period between January 2002 to March 2013. We followed the guidelines outlined by CRD [12] to ensure robustness. We only included those studies that met all criteria. We chose not to include the word ‘engagement’ isolated from other key words in order to retrieve only the papers in which authors explicitly referred to patient engagement as an autonomous concept, and not as synonyms of other related terms.

Consequently, our analysis covered only those titles and abstracts in which patient engagement was adjectivally defined and contextualized, and the central topic of the article.

Data extraction and quality assessment

Following the methodological approach of a systematic review,[13] two researchers (SB, GG) extracted data independently by using a multi-step process to create a sample of studies to be included in the analysis (Figure 1).

Figure 1. Study selection process.

We collated initial references in citation files using Endnote software, removed duplicates and screened titles and abstracts against eligibility criteria. Two researchers (SB, GG) reviewed studies in duplicate until adequate agreement (Kappa > 0.80) was achieved. Disagreements during initial screening were automatically included. Disagreements in abstract screening were reconciled by discussion, consensus or arbitration by third reviewer (EV). After the initial screening and exclusion of papers deemed less relevant (N=1060), we created a database of 259 sources. All the abstracts from this database were read again and coded based on the year of publication and the disciplinary field of the journal (through consensus reached by the research team during discussion meetings).

Data analysis

We chose to analyze retrieved data according to a linguistic approach in order to provide an account of how the words are actually used to build meanings related to patient engagement in health care. [14][15] To gain this aim, we used T-lab 6.1 [16] to perform a lexicographic qualitative analysis of how themes are deepened in the various literature corpora. T-Lab software allows researchers to perform statistical analyses based on chi-square tests on a textual database basing on the words occurrences and co-occurrences (for a detailed account, see Gilardi & Lozza 2009; Graffigna, 2009; Barello et al., 2013). [17][18][19]
[20] Analysis is based on chi-square tests, allowing the researchers to cast light on significant thematic differences in the data set under investigation. Moreover, analysis conducted by using this software allowed us to relate thematic specificities with top-down variables that are criteria chosen by the researchers when organizing and classifying the text corpus. The interpretation of the statistical outputs in making inferences on the meaning of the relationships was based on statistical measures. [18][19]

Analysis was carried out to offer a snapshot of the main themes related to patient engagement (1) across disciplinary fields, considering the journals’ disciplinary area, and (2) time spans.

Results

Specificity Analysis (SA)[a]

Specificity Analysis (SA) on the sub-corpora identified by our first variable (“Field of inquiry”) was conducted to identify the main thematic specificities of patient engagement conceptions among different academic fields (biomedical sciences, nursing, mental health, public health, other health professions). The disciplinary field of the journal was assigned by reaching a consensus during discussion meetings among the research team, which took into account the ranking area of the journal and the main topic of the paper. (See Figure 2).

Figure 2. Specificity Analysis (SA) of the discipline sub-corpora.
The tables list significant words and their corresponding chi-square values, the occurrences of words in the considered variable level, and the occurrences of the same words in the entire data corpus. (p<.05)

Specificity Analysis on the “Field of inquiry” sub-corpora revealed the following specificities:

Biomedical research: engagement conceptualized as an effective tool for health self-management.

The biomedical field mainly describes engagement as a key factor in obtaining effective and patient-tailored disease management plan. There is acknowledgment of the importance of involving patients in learning processes aimed at fostering their self-management skills (see Figure 2, in which the most typical words occurring in this subset of papers were self-management, participation, compliance, learning, tailored). In this subset, patient engagement is conceptualized as a “learnable” and “malleable” patient attitude. Analysis showed that terms such as participation, involvement and activation are conceived as strategies enacted top-down by the health care system to mobilize patients to engage in managing their own diseases. Furthermore, in these papers the main focus is on cognitive processes related to the patient engagement experience; it is recognized that these depend on the patients’ level of health literacy. According to this perspective on patient engagement, information, communication, and education concerning the processes of care are key issues in order to facilitate patients’ health management.

Nursing and caring research: engagement conceptualized as patient’s self-awareness.

In this subset of papers, patient engagement is explained as a pivotal element in legitimizing the patient’s expression of physical and emotional needs, thus better orienting professional interventions. Nurses play a central role in engaging patients in the health care process as they facilitate patient-provider communications and emotional disclosure (see Figure 2, especially words such as communication, actively, recognize, need, facilitate). In this data set, health professionals emerged as facilitators of patient engagement when enacting a role of emotional support. Health care practitioners are called upon to value the patient’s emotional status, perspectives and choices and incorporate these into the planning and delivery of medical care.

Mental health research: engagement conceptualized as clinical alliance

In this subset of papers patient engagement is conceived as a means to obtain better clinical outcomes as it contributes to foster a collaborative approach to the symptoms’ cure and supports the development of effective coping strategies for disease management (see Figure 2 especially words such as disorder, treatment, acceptance, collaborative, cope). In this data set, the focus is on therapeutic alliance that health professionals and patients develop during the medical encounters. In this frame, the definition of patient engagement is related to its behavioural component, in terms of “good practices” that the patient has to develop in order to manage his/her cure. According to this perspective, patient engagement is an innovative approach to implement an effective care management that is grounded in a mutually beneficial partnership among patients and health care providers.

Public health and health service management research: engagement conceptualized as citizens’ empowerment.

This academic field addresses patient engagement as a means to foster consumer empowerment and to orient client-directed health policies. Engagement is considered a valuable resource to shape collaborative care strategies and health promotion interventions. Moreover, it is conceived as a marketing concept that may guarantee high-quality intervention delivery and health care cost reduction (see Figure 2, especially words such as consumer, empowerment, health care cost, policy, community, collaboration). In this data set, the focus is on the community and the social contexts in which patients are involved, which are considered crucial drivers for engaging patients. In addition to the potential for achieving greater efficiencies in resource use, encouraging patients to engage with their care and to take more control when they are ill has the potential to be an effective tool for improving public health.

Multidisciplinary health research: engagement as effective disease self-management.

This field focuses on engagement as a determinant for disease self-management even in non-traditional care settings. New technologies may offer valuable tools to facilitate patient activation and engagement in self-care and preventive behaviours (see Figure 2, especially words such as internet, coach, continuity, self-care). In this data set, patient engagement is oriented by a broader vision of health care, one that goes outside the institutional boundaries of clinical settings and that includes peer-to-peer exchanges (patient-to-patient; patient-to-health coaches).

Multiple correspondence analysis (MCA)[b]

Multiple correspondence analysis (MCA) of the whole database corpus identified two factors explaining the thematic variance of the considered corpus of data (Figure 3).

Figure 3. Multiple correspondence analysis.
The tables list the thematic specificities of the factors that explain variance between elementary contexts (EC). The factors are interpreted on the basis of the threshold values of their constitutive elements (ie the words that are “more typical”/ “concentrated” at each pole of the axes). (p<.05)

The first factor (on the horizontal axis) is related to the relational scope in which patient engagement develops and is sustained. The axis opposes topics regarding a “systemic” relational level of the patient engagement. Sources in this data set conceive, on the one hand, patient engagement as an outcome of multiple exchanges between patients and their networks of care, both “expert” (citizen-health policy program; patient-physician; patient-health care organizations) and “lay” (patient-patient, patient-caregivers, patient-technology) (Figure 3, especially such words as technology, HCS, people, prevention, peer); and topics related to the dyadic relational level of patient engagement. Here, patient engagement is considered an outcome of a one-to-one relationship between the patient and his/her health provider or between the citizens and the public health institutions (Figure 3, especially such words as nurse, aid, alliance, and continuity of care).

The second factor is related to an endpoint scope describing the main expected outcomes of engaging patients in health (on the vertical axis). It opposes topics related to health promotion outcomes sustained by health organizations, thus highlighting a general acknowledgment of new care approaches that also imply the development of new objectives in health policies not restricted solely to the treatment of disease but also aimed at primary prevention and the promotion of population health (see Figure 3, especially such words as consumer, encourage, empowerment, health program); to topics related to disease management outcomes in terms of both patients’ self-management of care and also by the use of technology and disease management through the clinical encounter (Figure 3, especially such words as pain, observation, register, disorder).

In the following paragraphs, we describe how the debate around patient engagement has developed across years from 2002 to the present. (Figure 4).

Figure 4. Thematic map of Multiple Correspondences Analysis (MCA).

The Multiple Correspondences Analysis (MCA) describes the relationships between the semantic units and variables that divide the corpora. The results are expressed as specific content similarities and differences between the various sub-corpora.

In the lower left quadrant of the map, academic contributions from 2000 to 2008 are positioned.
In this time span, patient engagement is conceived as a means to realize more effective disease management by sustaining a positive working alliance between patients and their health care providers. Collaborative decision-making, where patients are active partners with the clinician in treatment decisions and plans, is frequently recommended in these articles as an effective way to foster trusted relationships. According to this perspective, clinicians and patients can work together as active partners to clarify acceptable medical options and choose appropriate treatments.

In the upper left quadrant of the map, academic contributions from 2009 to 2010 are located. These mainly refer to patient engagement as a result of an effective relationship between citizens and the health care system aimed at promoting health and disease prevention and saving health care costs. In this perspective, patients can play a distinct role in protecting their health, choosing appropriate treatments for episodes of disease management. In this period, research about patient engagement seemed to show that it could improve patient experience and also be effective clinically and economically. In the upper right quadrant of the map, academic production from 2011 to 2012 is clustered. Contributions in this area belong primarily to medical sciences and mainly describe patient engagement as a result of a multi-level relationship between citizens and the health care system (ie, doctors, health care organizations; health care policies) featuring individuals’ participation in health promotion s. This perspective seems to focus specifically on providing health information to patients and the public and on the role of health literacy in fostering patient engagement.

In the lower right quadrant of the map, the contribution of multidisciplinary research from 2011 to 2012 suggests consideration of patient engagement as an effective way to foster patients’ self-management of their disease by supporting the use of technological devices that can facilitate self-monitoring skills and the ability to make more focused requests of health care providers.

Discussion

This paper surveyed a large spectrum of issues related to patient engagement that suggest this term has been used to orient policies for different levels of actions. It is important for policy makers at the global, national, and institutional levels to understand the scope and importance of these issues and to take a proactive approach to developing policies that facilitate smooth and reliable planning of patient engagement programs aimed at supporting successful therapeutic adherence through scalable and sustainable interventions.[21] In this paper, we used analysis based on lexicographic software to synthesize the large and diverse body of academic literature related to patient engagement in health care. In particular, the innovative methodological approach used in this review, rather than providing an aggregative synthesis and quality appraisal of all available evidence, aimed at clarifying the main semantic patterns relevant to this topic. The resulting review process was iterative and dynamic and was guided by a broad question that remained open for modification. The strategy for searching and selecting relevant sources was similarly flexible: rather than critically appraising their methodological quality, the included sources were considered in the context of their theoretical contributions to the emerging construct. We believe that the arguments proposed in this synthesis may provide a useful contribution to move toward a shared definition of patient engagement.

Despite the widespread use of the term “patient engagement,” our study showed significant variations in its conceptualization, testifying that the debate on this issue is still in its infancy. In particular, the multiplicity of studies present in the literature, and more generally the different disciplinary domains involved in the debate about patient engagement, seem to focus alternatively on different and singular aspects of the patient engagement phenomenon while missing the whole picture of the elements that may hinder or facilitate patient engagement.

The on-going academic debate seems to focus principally on patient engagement’s impact on clinical and economical outcomes, seeing patient engagement as a static rather than as a dynamic condition. This complicates deep analysis of the potential causal relations among drivers and constitutive dimensions of patient engagement and the understanding of the evolving phases this concept may go through.[22][23][24]

Moreover, the voice of patients in defining what patient engagement is and what may favour it is still under-represented in the literature, thus suggesting the need for more research on patients’ perspectives.[2] This information could result in clinical practices that could improve the patient’s experience with care. The understanding of patients’ subjective experience is often reduced to its cognitive, behavioural or emotional components, whereas a holistic understanding of the patients’ complex psycho-social experience is lacking.[24]

Finally, the conceptualization and expected outcomes of patient engagement vary depending on the historical time frame in which the research was conducted. This suggests that the concept of patient engagement has gained different meanings and value depending on its varied conceptualizations across the years. It is notable that from 2002 to 2006, a major interest was devoted to defining the relational nature of patient engagement as a key component of a patient-centred medical paradigm. This probably led authors to link the term patient engagement to more rooted constructs such as therapeutic alliance and patient empowerment.[25][26][27] Both approaches focused on patient engagement as a tool to improve patient autonomy and disease self-management. On the one hand, the focus is on the patient’s power and ability to build an effective and trusted relationship with the health provider. On the other hand, patient engagement is seen as valuable in the attempt to incorporate patients’ perceptions, values and preferences, thus making health care truly responsive to patients’ subjective needs.[28][29] From 2008 to the present, probably due to the onset of the global financial and economic crisis, patient engagement was conceived as a means expected to allow health care systems to prevent unnecessary costs and optimize and rationalize health services’ delivery.[30][31] Fully engaged patients are expected to gain major improvements in health status due to more effective public health measures.[32] For example, the recent attention to the economic implications of patient engagement shows how the definition of this concept was deeply affected by the historical context, as it seems to be a cultural issue typical of the time span in which it developed. More attention to how the cultural context may frame patient engagement is thus needed.[33][34]

Conclusion and recommendations

Our results suggest that we view patient engagement as an evolving concept that reflects the historical and disciplinary context of the patient’s care experience. We argue that it may give insights about the dynamic nature of this term and its drivers at the individual, relational and organizational levels. From this perspective, based on the results of this study according to a positive psychology perspective,[35] we propose to define patient engagement as a processual multi-level experience that results from conjoint cognitive (think), emotional (feel) and conative (act) orientation of individuals towards their health management.[24] According to the patient engagement model by Graffigna and colleagues,[36] patient engagement is a process featuring four sequential phases. In the phase of “blackout,” patients fall into an initial state of emotional, behavioural and cognitive blackout determined by a critical event that appears unexpected and out of their control. In the subsequent phase of “arousal,” patients are hyperattentive for all symptoms their bodies produce. In this phase, symptoms are conceived of as “alarm bells” that cause patients anxiety and trigger dysregulated emotional responses. The “adhesion” phase comes when patients have enough knowledge and behavioral skills to effectively adhere to medical prescriptions and feel sufficiently confident in their own emotional strength to cope with their health condition. Finally, the “eudaimonic project” phase features patients that have fully come to terms with their health condition and have accepted that the patient self is only one of their possible selves. They are also able to recognize their internal resources needed to project satisfactory life trajectories for their future. The different experiential dimensions (cognitive, emotional and behavioural) play different and complementary roles in the consecutive phases of the process (blackout, arousal, adhesion and eudaimonic project). They may be seen as key factors for promoting patients’ advancement in this process.

In our view, a wider and more comprehensive modelling of patient engagement should take into account the roles, features and evolving characteristics in time of all the pivotal elements in the process, such as the engagers (ie health care professionals, organizations, communities…) as well as of engagees (ie, the patients, their caregivers…) and of engaging elements (ie, devices, interventions, tools…). This perspective towards engagement may help policy makers in setting research and funding agendas that can really improve the quality, relevance, ethical dimensions and implementation of the research conducted and ensure that research resources address the issues which are most important to patients affected by health care problems.[37][38] Furthermore, this approach can help in drafting guidelines for planning interventions able to foster patient engagement in a way that is really fine-tuned with the specific phase of the patient’s experience (Figure 5). It may contribute to understanding the real value of patients being involved in the care process according to a patient-centred approach. [39]

Figure 5. Potential guidelines for planning and developing interventions to foster patient engagement.

Endnotes

a. This analysis enables us to check which lexical units (words, lemmas or categories) are more typical within a corpus subset defined by a categorical variable. In our analysis this helped in detecting the underlying conceptualizations and representations of patient engagement that oriented authors when defining or using the concept patient engagement in their papers. ↩
b. Multiple correspondence analysis (MCA) was performed to sum up the relationships between the two variables used to categorize the entire corpus of data (“Field of inquiry” and “Publication date”). This procedure, based on the count of variables’ inertia, allowed us to analyze the pattern of relationships between the two variables used by researchers to label each abstract and put them in a comparative thematic map which includes all crossed variables. ↩

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Copyright: © 2014 Serena Barello, Guendalina Graffigna, Elena Vegni, A. Claudio Bosio. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educati