The Many Faces of Patient Engagement
Summary: As the concept of patient engagement is increasingly accepted and valued among health care stakeholders, so has the number of terms and definitions used to describe and capture the same or similar activities or experiences across various institutional settings; by different health disciplines and administrations; in different countries; and by patients themselves. This study was conducted to gain a more clear understanding of the term “patient engagement” and what it means to different stakeholders in different health settings. Using focus groups and interviews with key stakeholders (patients, health providers and administrative leaders within one large provincial health system) and literature review, the study found a lack of consistency in terminology and definitions around the concept of patient engagement. It was evident that defining patient engagement is very complex, but also that there is a need for common language in patient engagement. All stakeholders must have the same expectations and understanding in order to achieve meaningful and successful patient engagement.
Keywords: Patient engagement, patient involvement, patient participation, citizen engagement, active engagement activities.
Citation: Gallivan J, Kovacs Burns KA, Bellows M, Eigenseher C. The many faces of patient engagement. J Participat Med. 2012 Dec 26; 4:e32.
Published: December 26, 2012.
Competing Interests: The authors have declared that no competing interests exist.
With the emerging notion that patients are critical stakeholders in their health care and decision making, patient engagement  is increasingly recognized as having a major role in improving quality and safety of health care interventions, service delivery, and promoting ideal health care and personal health experiences across the continuum of care. While widespread efforts at patient engagement are relatively new, it continues to grow, as do the number of terms and definitions used to describe and capture patient engagement activities or experiences.
As part of a larger research study, this study, as described by Arksey and O’Malley, was proposed to include a review of both published and gray literature, as well as to report the result of a number of focus groups and interviews with patients and families, service providers, and administrative leaders.
One of the key themes that emerged from a preliminary review of the literature and focus groups was the variation in terminology and definitions used to describe patient engagement. This led to formulation of research questions which guided this study: What are the different terms used for similar kinds of defined or described activities? How many ways are there to define or describe “patient engagement?” What are the elements or components of “patient engagement” that are common across these terms?
This scope-defining study was part of a larger study conducted within Alberta Health Services concerning patient engagement. Alberta Health Services has a Patient Engagement Department with staff to oversee and provide consultation for those who are involved with patient engagement activities. Alberta Health Services defines engagement as “a broad practice of two-way interaction guided by a set of principles, processes, and activities that provide an opportunity for stakeholders to be involved in meaningful interactions. Engagement considers and incorporates the values and needs of patients, clinicians, and communities into health service decision making to enhance transparency and accountability.”
A mixed methods approach was used for this scope-defining study, in which the interviews and focus groups were designed to validate or confirm what was found in the literature. By discussing with patients, providers, and leaders terms that are used to describe patient engagement, they were able to describe what patient engagement meant to them and what expectations they had regarding patient engagement.
A six-member working group was established to conduct the literature review on “patient engagement.” The search strategies for both the published peer-reviewed and gray literature included identification of search terms, as well as inclusion and exclusion criteria and inter-rater article/document screening forms. A librarian provided the expertise for the searches and verification of appropriate search terms and criteria.
To guide the search for relevant published literature, inclusion/exclusion criteria were determined, as shown in Table 1.
Table 1: Inclusion/Exclusion Criteria for Published Literature Search.
The initial search was carried out using the following terms: “patient engagement,” “patient involvement,” and “patient participation.” The databases that were used to carry out the initial search were Embase and Medline. An expanded search followed to ensure that the concepts related to patient engagement were captured. Additional terms and phrases were applied, including terms that capture “patient” within it such as “consumer,” “public,” “stakeholder,” or “citizen,” and applied along with other terms for “engagement” such as “participation,” “involvement,” “consultation,” “inclusion,” “collaboration,” and “partnership.” The expanded search of the published literature was conducted in Embase, Medline, ERIC, Web of Science, and ProQuest databases. Search criteria were limited to program and/or governance level patient engagement only, in keeping with the parameters outlined as part of the larger research study.
The gray literature was searched using modified inclusion/exclusion criteria from those outlined for the published literature (see Table 2). Because the gray literature searches included searching by specific countries or websites, additional inclusion criteria were included. Key terms used for the search also varied slightly from country to country as sometimes different terms are used to represent the patient populations. For example, in Canada, the most commonly used term for patient is “citizen;” in Australia, the most commonly used term for patient is “service user.” However, key terms such as “patient engagement,” “patient or consumer participation,” or “patient involvement” were frequently used to search all the gray literature across each of the countries and generally.
Table 2: Inclusion/Exclusion Criteria for Gray Literature Search
As with the published literature, a second targeted search was completed with specific websites, and with specific countries such as Australia and the United Kingdom, two countries which have established patient engagement as part of their healthcare deliberation and decision making processes.
Interview and Focus Group Component
Approval was obtained from three different ethics boards prior to selecting and gaining consent from participants to conduct interviews and focus groups. All participants were informed about the study and understood their involvement in the focus groups and interviews would be confidential and anonymous.
Four patient engagement initiatives across Alberta Health Services participated in the interviews and focus groups. Within each initiative there were three types of participants — patients, providers and leaders — for three homogeneous groups. Patient participants included family members. Providers and leaders were differentiated based on their roles and responsibilities within the initiative. The four patient engagement initiatives were selected based on the criteria outlined in Table 3. Engagement of patients in decisions about their own individual care was not included in accordance with the mandate of the larger research study.
Table 3: Selection criteria for interview and focus group patient engagement initiatives.
Recruitment for the four initiatives was done through a series of presentations at regularly scheduled committee meetings. Along with an overview of the study, potential participants were provided with information related to what they would be asked to do if they participated in the study. They were also given a copy of the consent form and the research/evaluation consultant’s contact information. Interested committee members were asked to contact the project research/evaluation consultant to schedule a semi-structured interview (via telephone or face-to-face) or participate in a focus group. Guiding questions explored individual understanding of patient engagement. Interviews and focus groups were audio-recorded, transcribed, and thematically analyzed. A team of three consultants with various educational backgrounds, research experience and knowledge about the project hand-coded the interviews. Each consultant independently reviewed three transcripts and worked inductively to draw out themes from the data, then met to deductively establish a coding framework which was subsequently used to analyze individually assigned transcripts. Assignment of transcripts was such that one consultant was responsible for all of the patients, providers or leaders within one initiative. However, each consultant was responsible for a different type of participant across initiatives. This allowed each consultant to be involved with analysis of each type of participant (patient, provider or leader) as well as with each of the four initiatives. This process ensured inter-rater reliability with the qualitative data analysis and results.
The results from the preliminary focus groups and literature searches support the scope-defining study approach. Although there is a large amount of literature on patient engagement, the specific research questions proposed for the terminology and definitions or descriptions for patient engagement were validated by these groups for use during the literature review.
The initial search of the published literature yielded more than 10,000 articles which were screened by the scope-defining review working group. Of these, 224 abstracts were rated by the working group and selected for further screening based on the proposed research questions. Of all of these abstracts, 23 articles were screened, reviewed, and summarized. This search strategy provided foundational knowledge on general patient engagement literature. From the gray literature, over one million items were initially obtained and, as it became more specific with targeted phrases, the number of items decreased.
The final count identified 23 documents (two published and 21 gray documents) within which 15 different terms related to “patient engagement” were found, two of which were “involvement” and “participation.” The actual term “patient engagement” was rarely found in the literature. As shown in Table 4, there are multiple and varying terms and definitions used for “patient engagement” activities.
Table 4: Terminology and Definitions Related to Patient Engagement.
A second finding of the project scope-defining literature review was the number of documents that focused on stakeholder interpretation and expectation when involved in patient engagement activities. Numerous papers noted that the concept of patient engagement is understood or interpreted differently by different stakeholders. These stakeholders may also have different expectations or outcomes. A lack of consensus and understanding about terminology, the goals and expectations and roles and responsibilities of stakeholders are major barriers to achieving meaningful and successful patient engagement. These differences in interpretation and expectation could present as barriers if not anticipated in the planning process.
Participants in the focus groups and interviews, patients (n=17), providers (n=3), and leaders (n=8), provided feedback on their understanding of patient engagement. Participants made reference to terms such as patient engagement, patient and family centred care, patient focused perspective, citizen engagement, and patient experience. As well, they applied these terms at the organizational, program, and point of care levels. Some participants used these terms interchangeably whereas others made a distinction. while some patient participants felt that their committee or advisory group should also facilitate community engagement, not just patient engagement, a few patient participants spoke to citizen engagement as being comparable to patient engagement. Participants provided multiple definitions and expectations of patient engagement.
Table 5 outlines a selection of the quotes and reflections received from participants when asked to define patient engagement and participant roles and expectations.
Table 5: Quotes and Reflections from Stakeholder Interviews and Focus Groups.
Although the term “patient engagement” is commonly used in discussion about meaningful patient involvement in health care initiatives, the term was rarely found in the literature. Upon reviewing the literature and with participants providing definitions, it became evident that there is a lack of common language, terms, and definitions used for “patient engagement” and also for the description or interpretation of this term by stakeholders. As outlined in Table 4 above, 23 selected articles resulted in 15 different terms for “patient engagement” or related activities, and 26 corresponding definitions. The most popular terms used were “citizen engagement,” “community engagement,” and “public involvement.” The terms “patient” and “engagement” were less likely to be used, and were very specific in terms of their definitions.
Defining “patient engagement” is not an easy or clear exercise. Sheedy and colleagues  recognized this issue when discussing the emerging concept of citizen engagement where “the lines between citizen involvement, participation and engagement are often blurred.” Others have also recognized this issue for the term “public participation” that is widely used in professional literature on health care and is often used interchangeably with other conceptually similar terms such as “patient involvement,” “patient engagement,” “patient partnership,” and “patient collaboration.” However, there is broad support for the idea that patients should be “involved” and should “take part” in health care, but no clear consensus exists about what precisely this means and how much or to what extent patients are included. Although these terms are used in the literature, they are not readily defined in most papers and thus the reader is not necessarily clear as to what they mean.
Table 4 clearly demonstrates that there is a lack of consistent terminology and definitions around the concept of patient engagement. For instance, public involvement is defined as “an umbrella term that generally refers to a spectrum of methods with which to consult, engage, or involve citizens or stakeholder groups in policy or program development processes.” It also refers to “attempts on the parts of organizations such as Health Boards to include a range of (often unspecified) individuals and community groups and organizations, and the ‘public at large,’ in their activities. Additionally, each term used is typically supported by a model that uses one or more of the following words “participation,” “engagement,” “collaboration,” “consultation,” or others.
The terms involvement, engagement, and participation are often used interchangeably, with little agreement about what they mean in the context in which they are used. Forbat and colleagues conclude that “a range of ways of conceptualizing involvement are used interchangeably in policy and practice without due recognition of the very different meanings of public consultation, patient/carer involvement in treatment decision-making, and patient/carer involvement in service design and development.”
While the terms used to describe patient engagement are unclear and used differently in the literature, they have also been found to be interpreted and understood differently by patients, providers, and administrative leaders. This leads to ambiguity and confusion.
There was a distinct difference in understanding and interpretation of terms and definitions across the three stakeholder groups in our study: patients, providers, and leaders. Leaders tended to define patient engagement more closely to definitions found in the literature, while patients and providers tended to be less specific about including a model or process as part of the definition. Many researchers have shed light on the very issue of differences in stakeholder perceptions and interpretations of terms. Forbat and colleagues conclude that “one of the greatest barriers to integrating patient involvement into health services, policy and research is the conceptual muddle with which involvement is articulated, understood and actioned.” Based on these findings, it can be said that “patient engagement” is a relative term subjectively defined by individuals or groups/organizations that are planning to actively involve patients and their families in various health care advisory committees or care decision making activities.
Language and communication of expectations is clearly an issue that is found across all forms of patient engagement. This not only includes ensuring that the spoken language is understood by all members but that communication about participation opportunities should be addressed to the member stakeholders involved as well as others who may be impacted by the work. The misunderstanding and misinterpretation of expectations, goals and outcomes of patient engagement by different groups of stakeholders poses a barrier to achieving meaningful and successful outcomes. This may stem from a lack of training and guidance about the methods of patient engagement, or a lack of organizational culture that supports this type of work.
Conclusion and Recommendations
Although the purpose of the scope-defining review was to identify a clear definition or description for patient engagement, the authors soon realized that this was not a simple task.
The lack of common language, and multifaceted terms and definitions, suggest that there is need for clarity and communication when referring to patient engagement. However, the analysis of the various terms and their definitions suggest that there are common concepts. Based on this analysis, is it plausible to suggest that a single term and definition can be developed? Will one term for “patient engagement” accommodate the different stakeholders and health care contexts, or will the definition depend on the context in which the term is being used?
There is need for common language in patient engagement, and clear terminology with a clear definition, and clear goals for the activities identified with patient engagement. Clear and consistent messages and education about patient engagement definitions and terminology should be used to reduce ambiguity and confusion between and among stakeholders. Demystifying and defining what is meant by patient engagement, outlining a clear purpose, goals and objectives, and roles and responsibilities of stakeholders will reduce misunderstanding or misinterpretation. Education and awareness should also help to address the perceptions, expectations and negative attitudes towards patient engagement.
The authors would like to acknowledge funding from the Canadian Health Services Research Foundation (now known as The Canadian Foundation for Healthcare Improvement) and the Max Bell Foundation.
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Copyright: © 2012 Jennifer Gallivan, Katharina A. Kovacs Burns, Mandy Bellows, and Carol Eigenseher. 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 educational and other non-commercial settings.