Evaluation of Patient Engagement in a Clinical Emergency Care Network: Findings From the BC Emergency Medicine Network.

The British Columbia Emergency Medicine Network (EM Network) has collaborated with patient partners to utilize their experiential knowledge to inform planning and implementation. Patient partners participated in several EM Network committees and initiatives. This study evaluated how patient partners and other leaders in the EM Network perceived patient engagement efforts 1 year after launch. The Public and Patient Engagement Evaluation Tool V2.0 found that there was an appropriate level of patient engagement at this early stage, an opportunity to attract more patient partners as the EM Network grows, and a need to ensure adequate resources to support more activities.

Introduction

The British Columbia Emergency Medicine Network (EM Network) is a clinical and knowledge mobilization network with the mission of sharing, supporting, and innovating to improve patient care (1). The structure of the EM Network has been described elsewhere (2), but in brief it includes 4 core programs (Clinical Resources, Research and Innovation, Continuing Professional Development, and Real-Time Support), underpinned by a rich communications infrastructure, a robust evaluation framework, and an integrated patient engagement (PE) strategy.

Consistent with Canada’s Strategy for Patient Oriented Research (3), the EM Network strives to achieve benefits that matter to patients: improved health, quality of care, patient-relevant outcomes, patient experience, and improved cost effectiveness for the health care system. These are all central to the goal of a learning health system (4) that aims to be an active and informed partner in health care delivery. As such, PE is a foundational principle of the EM Network and integrated into all its activities. The EM Network defines a “patient” as an individual with lived experience of the health care system (specifically Emergency Departments), including caregivers. Patients who are involved in EM Network activities are referred to as “patient partners.”

Prior to the launch of the EM Network, a Patient Engagement Plan was developed, patient partners were recruited to serve on the Oversight Committee of the EM Network (the “Advisory Committee”) and, subsequently, additional patient partners were similarly recruited to the Clinical Resources Committee. Patient partners have participated in EM Network activities beyond their formal committee roles, including as coauthors on publications, and have thus been instrumental in creating, launching, growing, and evaluating the EM Network. As the EM Network continues to grow, so too will its PE efforts. It is essential, therefore, that we evaluate the extent to which the EM Network has been successful at this early phase to ensure we are meeting the needs of our patient partners and the EM Network as a whole.

The purpose of this evaluation is to understand how the EM Network is performing with respect to PE from both the nonpatient EM Network leadership and the patient partner perspectives. It is anticipated that our findings will inform and ultimately improve the engagement process and the overall Network.

Methods

A PE evaluation framework was developed internally using literature and EM Network patient partner input to answer the following key questions:

Is the appropriate structure in place to support PE activities?

Are patient partners actively engaged in the EM Network?

Does the EM Network have a participatory/collaborative culture such that patients are true partners?

How have patient partners influenced/impacted the EM Network?

The EM Network leaders other than patient partners (Management, Advisory, Sponsors, Innovation Initiative Leaders, and Clinical Resources Committee Members) as well as patient partners involved in EM Network activities were surveyed in December 2018 using a web-based survey, the validated Public and Patient Engagement Evaluation Tool (PPEET) V2.0. The PPEET was developed by McMaster University for Canadian health care organizations to measure PE. Version 2.0 was developed after use in a large comprehensive implementation study (5). Nonpatient partner leads were surveyed using the Organizational Questionnaire and patient partners were surveyed with the Project Questionnaire, Module B: Ongoing Initiatives. The surveys include both Likert-scale and open-ended questions. Nonpatient partner leads were asked to think about how the organizational requirements for PE influenced their involvement with the EM Network and to reflect on how that engagement exists broadly across the organization. Patient partners were asked to provide feedback on their participation in the EM Network. The original paper version of the tool was transformed into electronic format using the Qualtrics platform (qualtrics.com) with guidance from the PPEET Tool Manual (5). Questionnaires were distributed through email and participants were sent 2 reminders to complete the survey. All participants consented to have their responses included in the study through the survey tool.

Results

The Organizational Questionnaire was distributed to 43 nonpatient partners leads within the EM Network, 16 (37%) of whom completed the survey. Participants indicated the level of PE was appropriate but still at an early stage (Figure 1). They had good awareness of PE activities (Figure 2) but indicated more communication was needed to inform the broader EM Network membership. It was noted that as the EM Network expands, its PE efforts should also expand and that such expansion should include the requisite resources as illustrated by the following quote:

Figure 1.

Stage of patient engagement in the EM network. EM indicates Emergency Medicine.

Figure 2.

Level of awareness of patient engagement in the EM network. EM indicates Emergency Medicine.

We could do better, and we could do even more with more resources to support the staff time and partner travel time needed for further engagement.

The Project Questionnaire was sent to 4 patient partners working with the EM Network; 2 (50%) responded. Participating patient partners expressed a highly positive experience volunteering for the Network, and indicated they felt supported, valued, and were able to express their views. Resources and general awareness of the EM Network were identified as concerns. These sentiments are illustrated in the following quotes:

I feel I am supported very well in my role with the Network.

I believe I’ve been able to remind the clinicians of the patient’s perspective and encourage them to work to make health care more accessible.

Discussion

There is a growing awareness of the importance of including PE in the design and implementation of health care programs and services. Recent research has shown increasing enthusiasm to include patients in Canadian emergency medicine research (6 –8); however, a relative gap exists in including patients in the development and establishment of emergency care services and programs. One known positive example is Alberta’s Emergency Strategical Clinical Network (9). Evaluating such efforts, and the impact of PE on them, however remains lacking in the literature.

The EM Network has endeavored to bring the patient voice to the decision-making table regarding overall Network operations and planning, and through direct patient input into patient handouts distributed from emergency departments. By having patients at the table, we were able to understand their challenges in accessing emergency care in British Columbia (BC) and where resources for patients are lacking.

Our results from both surveys indicate that there is an appropriate level of PE within the EM Network in its early stages; though, as the Network expands, its PE efforts should similarly grow. We believe important insights were provided by our patient partners, but acknowledge that additional participants are required to achieve broader perspectives on the depth of issues related to emergency care. As the EM Network expands, we will focus on achieving greater patient partner diversity regarding characteristics such as geographic location, gender, age, and cultural background.

Nonpatient partner leads also indicated a perception that resources for PE activities, including training in PE, were lacking. There is no consensus on appropriate resourcing of PE, and organizational barriers often exist to providing honoraria to volunteers. We found good awareness of PE activities among all survey respondents, but concerns were expressed that more effort is needed to communicate those activities to the broader EM Network membership. Knowledge of the specific contributions of patient partners and how their contributions have influenced Network activities is arguably insufficient. It will be important for the EM Network to capture details of this in the future, both to demonstrate and to guide progress. The 2 concerns identified by patient partners were resources and lack of awareness of the Network, which is consistent with feedback from the other leads.

Based on these early results, the EM Network has already begun to enhance the effectiveness of PE through the following initiatives:

consulting with patient partners and local organizations working to increase PE in BC (eg, BC SUPPORT Unit, Patient Voices Network) to identify more opportunities for involvement;

exploring development of a patient council, led by current patient partners;

adding 2 new patient partners to the Management Committee;

increasing communication efforts regarding the patient partners’ contributions to EM Network members; and

allocating more resources toward PE (eg, staff, training, funding).

Limitations of this study include the low survey response rates. However, the 37% response rate of the nonpatient partner leads is consistent with the average completion rate of other groups who have utilized the PPEET organizational survey (10). Furthermore, 3 out of 4 patient partners indicated to the study team that they had submitted the survey; however, only 2 surveys were received suggesting a technical issue existed. To keep the survey responses anonymous, we were not able to determine who had not submitted. In future, we will consider pretraining on the survey platform and sending out a test survey to ensure no technical difficulties exist. One patient was also on medical leave. Despite only 2 respondents, it is noteworthy that all responses were positive and all 4 patient partners subsequently renewed their volunteer terms, factors which suggest an overall positive experience.

Overall, we feel that the PPEET tool was valuable in elucidating opinions about the current level and culture of PE within the EM Network. We will repeat this survey annually to assess trends, while continuing to modify our evaluation framework based on our findings. We also aspire to develop methodologies to evaluate patient partner contributions to the integration of our clinical network into a learning health system and their effect on patient outcomes.