The Many Faces of Patient Engagement

Jennifer Gallivan, MPH; Katharina Kovacs Burns, MSc, MHSA, PhD; Mandy Bellows, MSc (Candidate), RN; Carol Eigenseher, B.Ed

Disclosures

J Participat Med. 2012;4

Abstract and Introduction

Abstract

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.

Introduction

With the emerging notion that patients are critical stakeholders in their health care and decision making, patient engagement ^{[1 2]} 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,^[3] 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?

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Table 1. Inclusion/Exclusion Criteria for Published Literature Search.
Include	Exclude
Articles From 1995–2010; Written in English; Abstracts that contain one or more of the key search terms identified, and Studies that refer to the involvement of patients at the program or governance levels.	Studies that Incorporate public or consumer engagement in areas outside of health care; Refer to involvement of the patients outside of the governance or program level; and Involve patients in their own treatment and care aspects or in personal healthcare decision making.

Table 2. Inclusion/Exclusion Criteria for Gray Literature Search
Include	Exclude
Literature From 1995–2010; Written in English; That contains one or more of the key engagement-related and health care terms or areas; and From United States, Canada, Australia, and Europe (with special emphasis on United Kingdom).	Literature that Incorporates public or citizen engagement or similar areas rather than patient engagement, and in areas outside of health; and Refers to the involvement of the patients outside of the governance/program level.

Table 3. Selection criteria for interview and focus group patient engagement initiatives.
Involvement of patients, providers and leaders; Patients were continually involved (more than one meeting); Initiative meetings were held on a regular basis; and Initiatives represented different organizational levels (eg, governance, organization/system, and program).

Table 4. Terminology and Definitions Related to Patient Engagement.
Term	Definition
Citizen Engagement	A particular type of involvement characterized by interactive and iterative processes of deliberation among citizens (and sometimes organizations), and between citizens and government officials are interchanged.⁵
	A process of interaction between decision making bodies (often governments) and citizens affected by contemplated decisions. It is about giving citizens a voice on issues that matter to them and that will have an impact on their lives.⁶
	No stated definition but concepts are laid out, and reference made to public involvement.⁷
	Citizen Engagement is a process.⁸
	Means that citizens are actively part of the interactive debate, discussions and result of policy and program decisions.⁹
Community Engagement	Enables two-way interaction process between an organizational health body and its communities, so that communities have a role in the planning and decision making for health services and policies that affect their lives. It encompasses a wide variety of activities, from consultations with the public, to community development and community capacity building.¹⁰
	Refers to the arrangements for citizens and communities to participate in the processes used to make good policy and to deliver on programs and services.¹¹
	Developing and sustaining a working relationship between one or more public bodies and one or more community groups, to help them both understand and act on the needs or issues that the community experiences.¹²
Consumer, carer and community engagement	A dynamic relationship between health services, hospitals, health, consumers, carers, and community groups. Consumer, carer, and community engagement facilitates consumers, carers and community groups providing informed, valuable input to health service, hospital and health decision making. It includes participation of consumers, carers and community groups as partners in health service planning, policy, research, and service delivery.¹³
Consumer Engagement	The process of involving consumers in the planning and development of policies and services.¹⁴
Involvement	Any form of participation in the making of decisions, at whatever stage or level, from consultation at the end of the decision making process to joint working throughout the entire decision making process.¹⁵
Meaningful Patient Involvement	Means that patients take an active role in activities or decisions that will have consequences for the patient community, because of their specific knowledge and relevant experience as patients. The involvement must be planned, appropriately resourced, carried out, and evaluated, according to the values and purposes of: The participating patients or patient organizations; Other participating organizations and funding bodies; and The quality of their experiences during the involvement activity.¹⁶
Participation	Occurs when consumers, carers, and community members are meaningfully involved in decision making about health policy and planning, care and treatment, and the wellbeing of themselves and the community. It is about having your say, thinking about why you believe in your views, and listening to the views and ideas of others. In working together, decisions may include a range of perspectives. The definition of participation includes the terms "consumer," "carer,:"and "community."¹⁷
Public Participation	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.¹⁸
	Sometimes also referred to as public consultation or public engagement. Public participation denotes a range of public involvement, from simply sharing information about a pending decision (informing) through to creating a partnership arrangement and a willingness to agree on a course of action together. Public Participation Continuum (adapted from Health Canada and IAP2)¹⁹
	Public participation is a broad set of practices that include passive forms of citizen involvement, where the public's views are sought as input to a planning or decision making process, and more active involvement through direct participation in decision making processes and structures.²⁰
Patient and Public Engagement	It is much broader and deeper than the more established consultation processes, in that it involves the active participation of users of the service: patients, carers, and community bodies, thereby giving an effective and practical voice in the way we plan, develop, and deliver high quality and responsive services.²¹
Patient and Public Engagement	Patient and public engagement is the active participation of patients, carers, community representatives and groups and the public in how services are planned, delivered, and evaluated. It is broader and deeper than traditional consultation. It involves the ongoing process of developing and sustaining constructive relationships, building strong, active partnerships, and holding a meaninqfuldialoque with stakeholders.²²
Patient and Public Involvement	The active participation of service users, carers, community representatives, and the public in the development of health services and as partners in their own health care. PPI is broader and deeper than formal public consultation. It is about routinely giving local people a say in how services are planned, delivered, and evaluated, by developing good communication with them, providing the information to make informed choices about their care and working in partnership to make decisions about service improvement.²³
Patient Centered Care	Is respectful of, and responsive to, the preferences, needs and values of patients and consumers. Patient-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting.²⁴
Patient Engagement	Means engagement in one's own health, care and treatment.²⁵
Patient Involvement	The full participation of patients and their carers in their own care and treatment. Patient involvement can also be at the level of service delivery and quality monitoring.²⁶
Public Engagement	Various forms of highly inclusive public dialogue and deliberation that are critical steps towards policy development, collaborative civic action, and other forms of public problem solving. Often incorrectly used interchangeably with the term "civic engagement," public engagement generally involves a mutually-beneficial partnership between the public and an entity perceived as having power (government, a university, a corporation, etc.).²⁷
Public involvement	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. As such citizen engagement is one of many theories, methods or approaches that fit within the concept of public involvement.⁷
	Health Canada has a public involvement continuum with 5 levels–citizen engagement is considered a technique of public involvement.⁸
	The participation of members of the public or their representatives, in decisions about the planning, design and development of their local health services.²⁶

Table 5. Quotes and Reflections from Stakeholder Interviews and Focus Groups.
What is Patient Engagement?
"[It] generally has a lot to do with the knowledge that doctors have about various conditions and how they convey them to patients on a very basic frontline level…it's a lot of personal skills, a lot of one-on-one, making sure the family understands what's going on, the patient understands what's going on and why and what the methods are." – Patient "It means the patient, the family and the caregiver are being involved in the development of programs, the administration and the evaluation of programs, so that they're getting the best quality care and also, the patient is safe." – Patient "It means involving patients and families in all different levels and in all different ways in our health system, so that we can learn from their experiences and so that we can work with them and they can work with us." – Service Provider "The involvement of [patients] at an integrated level in terms of planning and operationalizing all aspects of an organization. And not just giving lip service to setting up an advisory group, but actually integrating them into interviewing staff, being part of your strategic planning sessions, all of those kinds of things." – Administrative Leader
What is your role or expectations of participation?
"My role is to present to the committee areas where I see there are gaps." – Patient "I think our mandate is to educate the public, represent the public and go out there and spread the word and bring ideas back." – Patient "Even with me, one of the biggest challenges is to try to look at this as, this is the patient's experience, and how can we facilitate that? That's a very different way of thinking for clinicians I think I'm getting better, but again, on the flip side, the patient experience is only one piece. Absolutely we need to listen to it, but it is a team and partnership. You need to make sure that the clinician voice is also heard and to be able to provide an environment where clinicians can actually do their piece as well." –Service Provider "That I will learn to be more engaging of patients in my everyday practice. It's not just that I want to go to that meeting once a month. If I actually live it to lead and own it, it will come through in all my interactions and it will be a spread that comes down itself. It's part of a culture. It's a way of being." – Administrative Leader "My role is to solicit feedback from [patients] with respect to the delivery of patient care in the areas I'm responsible for." – Administrative Leader

Authors and Disclosures

Jennifer Gallivan, MPH
Jennifer Gallivan, MPH, Consultant, Patient Experience, Quality & Healthcare Improvement, Alberta Health Services, has worked in the Alberta health system for over 13 years and her unique blend of work experience across the continuum of care, along with her Master's education in health policy & management, are valuable assets that provide her with a comprehensive foundation to excel in research and leadership roles. Much of her work has focused on prevention and health promotion including work at the Alberta Centre for Injury Control & Research (ACICR), the Stollery Children's Hospital and the Patient Engagement Department within the Quality & Healthcare Improvement portfolio of Alberta Health Services. Her passion for patient and family centered care and working in a collaborative manner enabled her to lead many successful projects including the development of the Family Room at the Stollery Children's Hospital. Jennifer has also had the opportunity to work at a grassroots level to provide basic health and nutrition information to adolescent girls in rural India through volunteer work with a non-government organization, SAMUHA

Katharina Kovacs Burns, MSc, MHSA, PhD
Katharina Kovacs Burns, MSc, MHSA, PhD., Director, Interdisciplinary Health Research Academy and Associate Director, Health Sciences Council, oversees interdisciplinary and interprofessional health research, education and practice. Her health and social programs, policy analysis and Knowledge Mobilization experiences relate with perspectives of decision makers and other knowledge users, while her research expertise particularly with vulnerable populations including people with chronic conditions or disabilities, seniors, women and low income, provides her with perspectives on their level of engagement in primary, acute and long-term treatment/healthcare decisions; service utilization and needs; as well as practice and policy impacts. In all her work and research she stresses the need to engage those stakeholders who are also the knowledge users. Her past work experience with provincial government health and social services ministries and with community organizations provides her with a broad-based perspective on health and social services, and the need to engage the public in decision making processes. She is involved in local, national and international interdisciplinary team research and applies various research approaches including case studies, systematic and scoping reviews, scoping studies, translational research, mixed and multiple methods, and Community-based Participatory Research.

Mandy Bellows, MSc (Candidate), RN
Mandy Bellows, MSc (Candidate), RN, has extensive experience in the areas of quality improvement, patient and family centred care, and patient engagement and Critical Care nursing. Having a passion for clinical quality metrics, Mandy was part of a team that pioneered the Hospital Standardized Mortality Rate's use in Canada, where the experience was documented and published in Health Care Quarterly. A SEARCH (Swift and Efficient Application of Research in Community Health) Canada Alumni, Mandy completed a local project titled, People Centred Care: How do health facilities plan, implement and evaluate the people centred care concept?, and a provincial project titled, Patient and Family Centred Care in Primary Care Networks. Currently working on her Master's Degree in Health Policy Research, Mandy has recently accepted the position of Clinical Nurse Specialist for Cardiac Sciences in the Edmonton Zone. In her spare time, Mandy enjoys spending time with her husband and practicing and teaching Moksha Hot Yoga.

Carol Eigenseher, B.Ed
Carol Eigenseher, B.Ed., DHSA has over 20 years of experience working for Alberta Health Services in a variety of administrative positions. Currently, Carol is an Education Consultant for the Patient Experience Department in Alberta Health Services. In her current role, Carol is involved in developing educational curriculum and materials to help advance the practice of Patient Centred Care and Patient Engagement throughout Alberta Health Services. Carol also delivers presentations upon request to program areas within Alberta Health Services and externally about the importance of "seeing the person inside the patient" and to teach leading patient and family centred care practices. Carol is married with four children and has 13 grandchildren. Based on her professional and personal experiences Carol believes strongly that patients and families have a strong and unique role to play in helping to improve the quality and safety of health services and is excited to be part of this work.

Competing Interests
The authors have declared that no competing interests exist.

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The Many Faces of Patient Engagement

Abstract and Introduction

Abstract

Introduction

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Authors and Disclosures

Authors and Disclosures

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