Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies

Action brief: Patient engagement and activation: A health reform imperative and improvement opportunity for nursing

Patient Engagement in Research and Innovation: A New Framework

Effectively engaging patients in their care is essential to improve health outcomes, improve satisfaction with the care experience, reduce costs, and even benefit the clinician experience. This article will address the topic of patient engagement directly and review the relationships between health literacy and patient engagement. While there are many ways to define patient and family engagement, this article will consider engagement as “patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system – direct care, organizational design and governance, and policy making – to improve health and health care [ Health Aff (Millwood) 32 (2013), 223–231].” We will specifically focus on the patient engagement and health literacy needs for three scenarios (1) decision-making, (2) health behavior change, and (3) chronic disease management; we will include the theoretical underpinnings of engagement, the systems required to better support patient engagement, how social determinants of health influence patient engagement, and practical examples to demonstrate approaches to better engage patients in their health and wellbeing. We will close by describing the future of patient engagement, which extends beyond the traditional domains of decision-making and self-care to describe how patient engagement can influence the design of the healthcare delivery system; local, state, and national health policies; and future research relevant to the needs and experiences of patients.

Patient and Family Engagement in Research in Era 3

BackgroundExtensive literature exists on public involvement or engagement, but what actual tools or guides exist that are practical, tested and easy to use specifically for initiating and implementing patient and family engagement, is uncertain. No comprehensive review and synthesis of general international published or grey literature on this specific topic was found. A systematic scoping review of published and grey literature is, therefore, appropriate for searching through the vast general engagement literature to identify ‘patient/family engagement’ tools and guides applicable in health organization decision-making, such as within Alberta Health Services in Alberta, Canada. This latter organization requested this search and review to inform the contents of a patient engagement resource kit for patients, providers and leaders.MethodsSearch terms related to ‘patient engagement’, tools, guides, education and infrastructure or resources, were applied to published literature databases and grey literature search engines. Grey literature also included United States, Australia and Europe where most known public engagement practices exist, and Canada as the location for this study. Inclusion and exclusion criteria were set, and include: English documents referencing ‘patient engagement’ with specific criteria, and published between 1995 and 2011. For document analysis and synthesis, document analysis worksheets were used by three reviewers for the selected 224 published and 193 grey literature documents. Inter-rater reliability was ensured for the final reviews and syntheses of 76 published and 193 grey documents.ResultsSeven key themes emerged from the literature synthesis analysis, and were identified for patient, provider and/or leader groups. Articles/items within each theme were clustered under main topic areas of ‘tools’, ‘education’ and ‘infrastructure’. The synthesis and findings in the literature include 15 different terms and definitions for ‘patient engagement’, 17 different engagement models, numerous barriers and benefits, and 34 toolkits for various patient engagement and evaluation initiatives.ConclusionsPatient engagement is very complex. This scoping review for patient/family engagement tools and guides is a good start for a resource inventory and can guide the content development of a patient engagement resource kit to be used by patients/families, healthcare providers and administrators.

BackgroundPatients can play a key role in delivering safe care by becoming actively involved in their health care. This study aimed at reviewing the literature for evidence of patients’ and families’ engagement in patient safety in the Eastern Mediterranean Region (EMR).MethodsWe conducted a scoping review of the literature published in English using PubMed, Medline, CINAHL, Scopus, ISI Web of Science, and PsycINFO until June 2023.ResultsA total of 9019 studies were screened, with 22 meeting the inclusion criteria. Our review found few published studies of patient and family engagement in patient safety research in the EMR. Thirteen studies explored the attitudes, perceptions, and/or experiences / preferences of patients, families, and healthcare providers (HCPs) regarding patient engagement in patient safety. Nine publications reported patient involvement in patient safety activities at varying levels. Three categories of factors were identified that may affect patient involvement: patient-related (e.g., lack of awareness on their role in preventing harms, unwillingness to challenge HCPs’ authority, and cultural barriers); HCP-related (e.g., negative attitudes towards patient engagement, poor patient-provider communication, and high workload); and healthcare setting-related (e.g., lack of relevant policies and guidelines, lack of training for patients, and HCPs, and lack of patient-centered approach).ConclusionThis review highlighted limitations in the current literature on patient and family engagement in patient safety in the EMR, including both the depth of evidence and clarity of concepts. Further research is needed to explore how to actively involve patients and their families, as well as to determine whether such involvement translates into improved safety in practice.

British Columbia Mental Health and Substance Use Services (BCMHSUS) provides mental health services, education, and health promotion initiatives to people with mental health and substance use issues across the province of BC. As a Project Coordinator in the Patient and Community Engagement portfolio, I performed a variety of work to support patient and family engagement under the newly created Patient Engagement Framework. Engaging patients and families as active participants and co-designers of their own care is an important component of patient-centred care that improves healthcare quality, health outcomes, and overall experiences of care at a system level. To work towards this goal, I developed a trauma-informed policy and procedure for BCMHSUS on patient and family engagement to serve as a guideline for giving patients and families a voice in the design and delivery of their mental health care. I also drafted two patient engagement playbooks called Managing Conflict and Respecting Emotions and Engaging Mandated and Incarcerated Patients, which focus on barriers and solutions to engaging patients in vulnerable circumstances. Moreover, I worked with provincial stakeholders to write the annual report for the BC Partners, which is a collaborative mental health promotion partnership between BCMHSUS and 7 provincial organizations with different mental health and substance use specialties (e.g. BC Schizophrenia Society, The Mood Disorders Association of BC, Canadian Institute for Substance Use Research, etc.). I also performed a literature review of the evidence supporting family engagement in patient- and family-centred care, and I made infographics and other visual designs to translate research and knowledge in visually appealing ways. Overall, my practicum helped me contribute towards advancing public mental health by valuing patients' knowledge, skills, and lived experience in the health system and working on a variety of initiatives to promote mental health in the province.

Background: Patient engagement has been identified as a central element of patient-centred care, and engaged patients are more likely to understand their health conditions, participate in treatment plans, and report greater satisfaction with their healthcare 1. Despite the widely recognized benefits of a more patient-centred healthcare system, there is a lack of consensus on how this can be achieved. Patients and their caregivers wish to be engaged in decision-making, but this is often not well accommodated in existing practice models. In prior work, we synthesized available evidence around engagement of older adults in healthcare decision-making into the “CHOICE” Patient Engagement Framework 2. The CHOICE framework emphasizes the development of meaningful relationships that allow mutual understanding of values and preferences. In partnership with patients, caregivers and health care providers, this current project aimed to answer the following questions: 1 How do the CHOICE principles correspond with actual experiences of engagement? 2 What factors currently facilitate or hinder engagement? and 3 What resources and materials are needed to support patient engagement? Methods: We conducted observations and interviews in two healthcare settings with providers n=10 and older adults n=15 to understand current perspectives, practices, and facilitating/hindering factors related to patient engagement. Health care providers n=120 were also consulted in a facilitated one-day workshop, with notes taken of small group discussion and individual feedback. Observation and interview data were analyzed using emergent coding as well as directed coding guided by the CHOICE Framework. Results: Experiences of engagement were consistent with the CHOICE Framework, and confirmed the importance of: understanding the whole patient; recognizing the importance of family caregivers; and training health care providers to engage patients and families in a meaningful way. System constraints, lack of education, and family dynamics present challenges to engagement of patients and families in decision-making. Flexibility in care approaches, knowledgeable care providers, and the building of trusting relationships facilitate more meaningful engagement. Healthcare providers indicated a need for more education on strategies for meaningful engagement of patients and families in decision-making; preferred education modalities include hands-on workshops and e-learning modules. Discussion & Conclusions: Our study found that elements of the CHOICE framework are relevant to the development of meaningful patient-provider engagement. Resources and education may facilitate these partnerships, but current practice and system constraints will challenge these efforts. Lessons Learned: In the current health care system, regardless of strategies and resources provided; it is difficult to take the time to have meaningful conversations with patients during clinic appointments. Building trusting relationships is key to successful patient-provider partnerships. Limitations: Work to date has been limited to primary and community care settings. Suggestions for Future Research: The resources and materials co-designed in this project will be implemented as part of a larger study to improve patient and family caregiver engagement in primary care settings. In future work, we aim to link engagement strategies, which enable mutual understanding of values and preferences, with tools for shared decision-making that support consideration of available research evidence.

ObjectivesAuthentic patient and family engagement in child health research is defined as researchers working in partnership with patients and families on all aspects of the research process, including refining the...

Patient and family engagement in patient safety in low- and lower-middle-income countries (LLMICs) is not well described. This scoping review synthesised the literature to identify key strategies, barriers and enablers of engagement and to explain how patients and families contribute to safety efforts in healthcare settings. Scoping review following Arksey-O'Malley and reported per Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. PubMed, Medline, CINAHL, PsycINFO, Scopus and Web of Science were searched from inception to April 2024. We included qualitative, quantitative and mixed-methods studies, published in English across all healthcare settings, that met the following criteria: (1) explored the attitudes, perceptions and experiences of patients, families or healthcare providers (HCPs) regarding patient engagement in safety activities; (2) described the participation of patients, caregivers or families in the design, delivery or evaluation of interventions aimed at promoting patient safety in healthcare facilities. Data were extracted using a standardised charting form, and a narrative synthe.sis was conducted to identify key themes. The National Health Service (NHS) framework for patient engagement in patient safety was applied to categorise forms of engagement (information, involvement and partnership) and levels of engagement (own care, service provider and system) among included studies. Of 7709 records screened, 36 studies met inclusion criteria. Twenty-three studies explored the perspectives of patients, families and HCPs on patient engagement in safety. Key findings revealed that while patients and families recognised the importance of their roles in safety, unclear role definitions, lack of training and communication barriers limited their participation. HCPs acknowledged the value of patient involvement but identified challenges such as knowledge gaps, time constraints and lack of institutional support. Thirteen studies involved patients and family caregivers in safety improvement initiatives. Most interventions were limited to information sharing, with only two achieving partnership-level engagement. Engagement primarily occurred at the individual and provider levels, with no studies addressing the policy level. Factors influencing engagement were identified at four levels: patient, HCP, system and community. Despite its potential benefits, the implementation and impact of patient and family engagement in patient safety efforts in LLMICs remain largely unexplored. Most efforts focus on information sharing through educational interventions at the direct care level, with limited involvement of patients and families at the partnership level. To enhance safety outcomes, future initiatives must adopt context-specific strategies that empower patients and families as active partners. Drawing lessons from high-income countries and adapting them to the socio-cultural and infrastructural realities of LLMICs will be crucial for developing scalable, cost-effective and sustainable engagement practices.

To obtain a comprehensive insight of the impact of patient and family engagement on patient safety and identify issues in implementing this approach. Patient and family engagement is increasingly emerging as a potential approach for improving patient safety. Mixed method multilevel synthesis. PubMed, CINAHL, Embase, and Cochrance Library (January 2009-April 2018). The review was conducted according to the principles recommended by the Cochrane Handbook for Systematic Review and in accordance with the PRISMA guidelines. Forty-two relevant studies were identified. Common intervention groups included 'direct care' and 'organization' levels with 'consultation' and 'involvement' approaches, while the 'health system' level and 'partnership and shared leadership' approaches were rarely implemented. Findings revealed positive effects of the interventions on patient safety. Most study participants expressed their willingness to engage in or support patient and family engagement. However, existing gaps and barriers in implementing patient and family engagement were identified. Future research should further focus on issuing consensus guidelines for implementing patient and family engagement in patient safety, extending the research scope for all aspects of patient and family engagement and patient safety and identifying priority areas for action that is suitable for each health facility. Policymakers should issue guidelines for implementing patient and family engagement in healthcare systems which would enable healthcare providers to implement patient and family engagement and improve patient safety appropriately and effectively.

T welve years ago my husband and I were happily content with the challenges and rewards of tending our fourthgeneration dryland wheat farm. I was also teaching English reading at the local community college. Then we were asked to be part of a rural healthcare research team—to participate not as study subjects but as community-based researchers. At that time, the concept of engaging patients in the research continuum and as co-researchers was considered experimental and, by some hardcore scientists, a bit quaint. Twelve years ago, I knew little about patient engagement and nothing about medical research. If asked, I would have said I was an engaged patient, informed about my own health. I stayed abreast of research as it was presented in the popular media. I maintained an active relationship with my primary care provider, and I felt empowered to ask hard questions, advocate for myself or my family, and demand some control over my health care decisions and actions. But, bottom line, I was and am a patient; I am not a researcher. Yet, here I am, commenting on today’s research on patient engagement. Engaging patients as co-researchers—co-creators, coinvestigators, partner advisors—is crucial to the successful translation of medical discoveries into everyday clinical practice. When I first had an opportunity to ask questions that matter to my community, to ensure that the participatory research process met the needs and personality of my small town, to improve the health of my community, I was a bit skeptical...and intrigued. I joined the Community Advisory Council of the High Plains Research Network (HPRN C.A.C.), created to complement the practice-engaged research of our university-based research network. The HPRN was collaborating with doctors’ offices and clinicians in rural and frontier Colorado, but something was missing. Research was happening, but the questions were not relevant to primary care practice or their patients, and the answers were not aligned with the way we in the community lived our daily lives. The missing piece was the patient voice and the real-life context that it brought to the research. Without this context, the research lacked local relevance and was, consequently, low impact. This is where I entered the world of patient-engaged research. For the past 12 years, I, along with a group of about 18 other community members, have straddled the fence between the university research world and our everyday lives in rural eastern Colorado. The High Plains Research Network is not alone. Patient, stakeholder, community member, and practice engagement has taken off and is now the norm in many academic settings. The National Institutes of Health’s Clinical Translational Science Awards encourage and support patient-engaged participatory research. The Patient-Centered Outcomes Research Institute (PCORI) requires active patient and stakeholder engagement in the research it funds. Patient engagement is a broad continuum of activities and participation, from fully engaged community-based participatory research (CBPR) to the less engaged individual patient representative sitting at an annual board meeting. While there is a robust body of literature on CBPR, less has been studied and disseminated on the rest of patient engagement. The two terms are not interchangeable. CBPR is one type of patient engagement. Patient and stakeholder engagement in patient-centered outcomes research (PCOR) falls along a broad continuum of engagement and participation. Common key elements are found across the continuum; however, the rest of patient engagement includes a wider variety of methods, locations, and research topics. The work of Forsythe and colleagues signals an important milestone in the progress toward more genuine patientengaged research. They studied the first group of PCORI pilot awardees, measuring patient engagement efforts actually occurring in the projects. They gathered data on the level of engagement, length and nature of engagement, facilitators and barriers to engagement, and how engagement impacted the research. This report provides an early understanding of the range of patient engagement strategies, activities, and lessons in PCOR. Their report is a starting point for patient engagement in the PCORI research portfolio and confirms key tenets that the HPRN C.A.C have found critical for success. Several key components of patient engagement are described. First, patients and other stakeholders can and should be engaged early and often. Successful engagement is not a JGIM

Plain English summaryPatient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences.Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team.This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research.BackgroundResearch funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities.DiscussionThe purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research.ConclusionsResearchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

270 Background: National Quality Strategy set forth by the Department of Health and Human Services emphasizes that each person and family is engaged as partners in their care. Appropriate use of quality measures can serve as a means of achieving this. Studies have shown that patient engagement can lead to improved healthcare outcomes, lower resource utilization, and reduced costs. As such, Avalere sought to identify oncology-related quality measures that address patient and family engagement, and determine ways to advance engagement in oncology through the use of quality measures. Methods: Avalere assessed publicly available sources to identify person and family engagement measures related to oncology, including measures related to patient education, care preferences, and care planning. Avalere also assessed the current use of these measures in CMS’ quality programs. Results: Avalere identified six oncology-specific measures related to person and family engagement. One of the measures is included in CMS’ Physician Quality Reporting System and the Electronic Health Record Incentive Programs. Three measures identified are related to documenting patients’ preferences during end of life care, two are related to care planning for pain and depression, respectively, and one is related to patient education on treatment. None of the measures are related to specific cancers. Conclusions: Avalere found lack of measures related to patient and family engagement in oncology. Given the importance of patient and family engagement during the course of disease management, opportunity exists to improve oncology care quality through measurement and evaluation of engagement. Oncology patients’ quality of care can be improved through data support, stakeholder buy-in, standardized methodology for measuring engagement, evidence linking engagement and outcomes, and implementation measures in incentive programs.

Patient engagement (PE) has become embedded in discussions about health service planning and quality improvement, and the goal has been to find ways to observe the potential beneficial outcomes associated with PE. Patients and health care professionals use various terms to depict PE, for example, partnership and collaboration. Similarly, tokenism is consistently used to describe PE that has gone wrong. There is a lack of clarity, however, on the meanings and implications of tokenism on PE activities. The objective of this concept analysis was to examine the peer-reviewed and gray literature that has discussed tokenism to identify how we currently understand and use the concept. This review discusses 4 dimensions of tokenism: unequal power, limited impact, ulterior motives, and opposite of meaningful PE. These dimensions explicate the different components, meanings, and implications of tokenism in PE practice. The findings of this review emphasize how tokenism is primarily perceived as negative by supporters of PE, but this attribution depends on patients’ preferences for engagement. In addition, this review compares the dimensions of tokenism with the levels of engagement in the International Association of the Public Participation spectrum. This review suggests that there are 2 gradations of tokenism; while tokenism represents unequal power relationships in favor of health care professionals, this may lead to either limited or no meaningful change or change that is primarily aligned with the personal and professional goals of clinicians, managers, and decision-makers.