Patient Engagement in the COVID-19 Pandemic
Evaluating Remote & Online Methods
By Leanne Dunne & Ashley Struthers
As most people on this planet can relate, life looks very different now than it did before COVID-19. When Manitoba saw its first case of COVID-19 in mid-March of 2020, staff at the George & Fay Yee Centre for Healthcare Innovation (CHI) began working remotely, and in-person interactions the way we knew them ceased to exist. Online videoconferencing services such as Zoom and Microsoft Teams, phone calls, and e-mails quickly served as a replacement for talking and working with each other in person. This not only impacted working relationships, but also immediately and significantly changed public and patient engagement at CHI.
As evaluation researchers, my co-worker Ashley and I saw this as an opportunity to assess and learn from remote and online engagement at CHI. We wanted to take a first step to understanding the impact that COVID-19 has had on engagement, the barriers and facilitators to creating a safe online space, and how online engagement affects roles and expectations, cost, time, equity, and work-life balance.
Our evaluation was informed by two frameworks focused on putting people (i.e. patients and the public) at the center of health care and related research. These are the Manitoba Quality Learning Framework (MQLF) and the Valuing All Voices Framework.
Manitoba Quality and Learning Framework
The purpose of the MQLF is to guide quality improvement in health care for Manitobans, providing a common vision and approach to quality, patient safety, and accreditation. It aligns with the Institute for Healthcare Improvement’s Quadruple Aim (improving population health, enhancing experiences and outcomes of the patient, reducing costs, and supporting care team well-being). For more information, check out the full MQLF document from Shared Health Manitoba.
The MQLF describes four dimensions of quality that informed our evaluation questions and methods, namely:
- Positive patient experiences (in particular, aspects such as safety and accessibility) — for example, questions about barriers and facilitators to engaging online;
- Healthy Manitobans — when asking about the overall impact of the pandemic on engagement;
- Healthy teams — how online engagement impacted roles and expectations; and
- A sustainable health system — are engagement goals achieved through online engagement?
The Valuing All Voices Framework
The Valuing All Voices Framework for meaningful, safe and inclusive patient and public engagement is guided by key theoretical perspectives: trauma-informed approaches, intersectional analysis, and critical reflexive practice. The components of the framework, co-developed with voices traditionally less heard in health research, include trust, relationship building, self-awareness, understanding and acceptance, education and communication. The framework is intended to guide research teams in developing authentic, meaningful, and inclusive research strategies that involve patients and the public in research decision-making.1
The Valuing All Voices Framework informed our evaluation through both underlying principles of trauma-informed approaches and intersectional analysis, but more specifically in terms of its key components:
- Trust: how to ensure everyone feels safe and supported in online engagement;
- Relationship Building: how meaningful is online engagement, how does it impact our relationships?;
- Self-Awareness: how individuals are impacted by the pandemic when it comes to engagement;
- Understanding and Acceptance: acknowledging cultural differences and how this relates to barriers and facilitators in online engagement; and
- Education and Communication: what works well with engagement, what is needed, is it successful?
Evaluating Online Engagement
We sought perspectives of both staff (CHI’s Patient and Public Engagement team) and patient partners (CHI’s Collaborative Partnership). The Collaborative Partnership is a group of patient and public partners involved in guiding CHI’s strategy for patient engagement, who also advise and participate in various health research and health care systems projects in Manitoba.
Three staff members discussed their experiences with online engagement in a group interview, and six patient partners completed an online survey on SurveyMonkey. Survey questions were adapted from the Public and Patient Engagement Evaluation Tool (PPEET) and feedback received from staff and patient partners.
The following questions were used in evaluation, to determine the impact of moving to virtual communication on patient and public engagement at CHI in Spring 2020:
Barriers & Facilitators
Although new challenges arose from shifting to online public and patient engagement, both staff and patient partners identified factors that enabled ongoing engagement related to trusting relationships, adaptability, and adjusting to technological realities.
Impacts on Engagement
Access and equity
Staff and patient partners were concerned that the transition from in-person to online engagement would impact equitable access to public and patient engagement. Though some patient partners found online engagement more tiring, and/or experienced connectivity issues, the Collaborative Partnership continued with strong participation from patient partners.
Challenges in creating a safe online space
Although staff felt fortunate to have built a strong foundation of trust with patient partners prior to COVID-19, they also found it more challenging to create a safe online space than in person. Within an online environment, it was more difficult to pick up on nuances and non-verbal cues.
“In person we can catch something, especially if one person says something that could be insulting to someone, we are able to catch it easier in person, but online it’s harder.”
- Staff member
Most patient partners talked about respectful relationships (e.g. not interrupting each other, not judging each other, sharing thoughts freely, valuing different opinions) as being a major factor in building a safe online space. Staff identified the need to address any incidents and establish guiding principles to ensure a safe space is created online.
“[A safe space] has respectful discourse, and creating brave spaces when we encounter different — and sometimes difficult — circumstances.”
- Patient partner
Work-life balance
Staff thought the ability to be flexible, establish boundaries, and know their own capacity were important factors in facilitating effective online engagement from home, while managing other roles (such as parenting).
Online engagement made it more difficult for some patient partners to balance their personal roles (e.g. parent, caregiver, work, social activities, managing a household). When asked about how social locations (e.g. race, ethnicity, gender, income, language barriers, immigration status, different abilities, indigeneity) affected their capacity or ability to engage in online meetings, patient partners specifically identified concerns related to mental health. For some, online engagement was more taxing, and some felt less equipped to deal with the emotions of others when not in the same physical space.
Few changes to cost
Overall, the cost of online engagement did not drastically change from in-person engagement. Honorarium rates did not change ($50 per hour), and patient partners were paid for their time, including informal “catch-up” and relationship building meetings. The cost of technology (i.e. Zoom) was added, but there was no longer a cost for food, travel, or parking. All patient partners felt they were appropriately compensated for their time, energy and expertise for online engagement.
Good use of time
Most patient partners felt that online engagement was a good use of their time, but the results were more varied regarding whether it took less time than in-person engagement. Although most patient partners thought the length of time allotted to each meeting was about right (one hour maximum, to accommodate needs related to screentime), a few thought meetings were too short in length (in-person meetings were usually 2.5–3 hours long).
Achieving engagement and project goals
Most patient partners thought that their input was useful, and that the Collaborative Partnership was achieving its goals through online engagement. They believed that their participation in online engagement would contribute to improving health outcomes, even in a virtual environment.
Overall, feedback from patient partners was positive, who:
- Felt safe participating online
- Thought online engagement in the collaborative partnership was a good use of their time
- Felt their input was taken into consideration and made a difference
Working Together to Overcome Adversity
The staff could continue collaborating with patient partners because they:
- Recognize the emotional toll of the pandemic and putting in place strategies to mitigate this (extra check-ins, pre-assessments)
- Took time to learn about the technology and shared this knowledge with patient partners
- Made adaptations to accommodate various needs (e.g. shorter meetings, other modes of participation)
- Debriefed regularly and frequently as a team
- Were flexible (e.g. time commitments, roles, engagement methods)
- Set boundaries when working from home
Though in-person meetings are undoubtedly preferred for meaningful and inclusive patient and public engagement, virtual and online spaces have allowed staff and patient partners to maintain contact throughout the COVID-19 pandemic. Open and ongoing dialogue around experiences, challenges, and needs has identified opportunities for “making the most” of a bad situation, and minimizing the impact of social distancing requirements on engagement. Through assessing needs early on, being adaptable and flexible, and understanding that the pandemic experience is in itself traumatic, engagement has been able to continue among members of the Collaborative Partnership. Established relationships and trust with patient partners in the Collaborative Partnership prior to the pandemic, including ongoing efforts to build safe spaces, enabled the team to continue meeting in a meaningful way.
About the Authors
Leanne Dunne and Ashley Struthers are evaluators with the George & Fay Yee Centre for Healthcare Innovation.
References
- Roche P et al. Valuing All Voices: refining a trauma-informed, intersectional and critical reflexive framework for patient engagement in health research using a qualitative descriptive approach. Res Involv Engagem 6, 42 (2020).
