Understanding patient engagement in health system decision-making: a co-designed scoping review (original) (raw)
Related papers
BMC Health Services Research, 2014
Background: Extensive 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. Methods: Search 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. Results: Seven 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. Conclusions: Patient 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.
Patient engagement in healthcare: pathways for effective medical decision making
Neuropsychological Trends, 2015
Making patients protagonists of decisions about their care is a primacy in the 21st century medical ethics. Precisely, to favor shared treatment decisions potentially enables patients' autonomy and self-determination, and protects patients' rights to make decisions about their own future care. To fully accomplish this goal, medicine should take into account the complexity of the healthcare decision making processes: patients may experience dilemmas when having to take decisions that not only concern their patient role/identity but also involve the psychosocial impact of treatments on their overall life quality. A deeper understanding of the patients' expected role in the decision making process across their illness journey may favor the optimal implementation of this practice into the day-today medical agenda. In this paper, authors discuss the value of assuming the Patient Health Engagement Model to sustain successful pathways for effective medical decision making throughout the patient's illness course. This model and its relational implication for the clinical encounter might be the base for an innovative "patient-doctor relational agenda" able to sustain an "engagement-sensitive" medical decision making.
Promoting Patient Engagement: From Theory Into Practice
2016
The key word patient engagement is worldwide becoming a “must do” for academics, industries and policy makers in the healthcare arena. The academic and managerial “buzz” on patient engagement is growing at a dizzying pace. In 2015, 665,300 new web indices were found on Google.com with the key words “patient engagement,” including 1,230 news pages and 6,200 dedicated blogs. During this same period, over 3,500 new academic papers focused on patient engagement (see Figure 1) The idea of patient engagement moves from the assumption that making patients co-producer of their health can enhance their satisfaction towards the healthcare system, as well as their responsibility in care, cure and prevention. A previous Book entitled Promoting Patient Engagement and Participation for Effective Healthcare Reform (Graffigna, 2016) has been dedicated to discuss the clinical and pragmatic value of favoring the active role of patients along their care journey. The different chapters of that Book wel...
2019
Patient engagement practices are increasingly incorporated in health research, governance, and care. More recently, a large number of evaluation tools and metrics have been developed to support engagement evaluation. This growing interest in evaluation reflects a maturation of the patient engagement field, moving from a "craft" to a reflective "art and science, " with more explicit expected benefits and risks, better understood conditions for success and failure, and increasingly rigorous evaluation instruments to improve engagement theories and interventions. It also supports a more critical view of engagement science, moving beyond reductionist views of engagement as a "black box technology" to a more subtle view of this broad category of complex interventions. Structured evaluation can advance patient engagement by supporting more reflective partnerships between patients, clinicians, health system leaders and citizens. This can help clarify mutual (and potentially contradictory) expectations toward engagement, provide a reality check toward claims of benefits and harms, and increase health systems' capacity to implement effective engagement practices over time. To do so, closer collaborations are required between engagement scientists and practitioners to align the theories, practice and evaluation of patient and community engagement.
2013
Patient and family engagement offers a promising pathway toward better-quality health care, more-efficient care, and improved population health. Since definitions of patient engagement and conceptions of how it works vary, we propose a framework.We first present the forms engagement can take, ranging from consultation to partnership. We discuss the levels at which patient engagement can occur across the health care system, from the direct care setting to incorporating patient engagement into organizational design, governance, and policy making. We also discuss the factors that influence whether and to what extent engagement occurs. We explore the implications of our multidimensional framework for the development of interventions and policies that support patient and family engagement, and we offer a research agenda to investigate how such engagement leads to improved outcomes. P atient engagementhas been called a critical part of a continuously learning health system, a necessary co...
International journal of health policy and management, 2017
Recent evidence shows that patient engagement is an important strategy in achieving a high performing healthcare system. While there is considerable evidence of implementation initiatives in direct care context, there is limited investigation of implementation initiatives in decision-making context as it relates to program planning, service delivery and developing policies. Research has also shown a gap in consistent application of system-level strategies that can effectively translate organizational policies around patient and family engagement into practice. The broad objective of this initiative was to develop a system-level implementation strategy to include patient and family advisors (PFAs) at decision-making points in primary healthcare (PHC) based on wellestablished evidence and literature. In this opportunity sponsored by the Canadian Foundation for Healthcare Improvement (CFHI) a co-design methodology, also well-established was applied in identifying and developing a suita...
Patient involvement in medical education: To what problem is engagement the solution?
Medical Education, 2020
BACKGROUND: Patient and public engagement is gaining momentum across many domains of healthcare, inclusive of education and research. In this framing, engagement is offered as a solution to a myriad of problems. Yet, the way problems and solutions are linked together may be assumed, rather than made explicit. In the absence of clarity, there is a risk that solutions which may have worked in one domain of healthcare could falter-or even create new problems-in another. OBJECTIVE: We use a model from organizational studies as a way to make sense of the relationships between the problems, solutions, and stakeholders operating in the name of patient and public engagement in healthcare. The "garbage can model"-is a playfully phrased but meaningful attempt to decipher the complex world of decision-making in organizations. We use this model to guide our framing of the solutions of patient engagement practice and the wide-range of problem statements that animate all of this activity. RESULTS: Following a discussion of the complexity of the field of patient engagement, we identify strategies for educators to conceptually weave problem statements, solutions, and stakeholders together in mosaics of engagement activity. We further suggest a movement away from considering problems to be solved to thinking about polarities to be navigated. CONCLUSIONS: As patient engagement becomes more embedded in decision making spaces in health professions education, we need a better understanding of how decisions are actually made in these organizations. We also need to consider that our most treasured solutions may have an uneasy fit-and some unintended consequences-as they enter new domains of healthcare. Finally, we advocate for critical approaches not just to the solutions of patient engagement, but to understand problem statements as they are defined, upheld, and disrupted through all of this work.
BMJ Open, 2021
ObjectiveTo identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems.MethodsWe conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme.ResultsOf 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes...