Abstract

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.

Highlights

  • 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

  • The CHOICE framework emphasizes the development of meaningful relationships that allow mutual understanding of values and preferences

  • 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?

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Summary

Introduction

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 decisionmaking, but this is often not well accommodated in existing practice models. 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? 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?

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