The impact of COVID‐19 on patient engagement in the health system: Results from a Pan‐Canadian survey of patient, family and caregiver partners

Abstract Introduction The COVID‐19 pandemic has had an impact on all aspects of the health system. Little is known about how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings within the health system, changed due to the substantial health system shifts catalysed by the pandemic. This paper reports on the results of a survey that included questions about this topic. Methods Canadian patient, family and caregiver partners were invited to participate in an online anonymous survey in the Fall of 2020. A virtual snowballing approach to recruitment was used. Survey invitations were shared on social media and emailed to health system and governmental organizations with the request that they share the survey with patient partners. This paper focuses on responses to two questions related to patient partner experiences during the COVID‐19 pandemic. Results The COVID‐19 questions were completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415) indicated their patient engagement activities had been impacted by COVID‐19. The majority (62.5%, n = 230) experienced at least a temporary or partial reduction in their patient engagement activities. Some respondents did see increases in their patient engagement activities (11.4%, n = 42). Many respondents provided insights into their experience with virtual platforms for engagement (n = 194), most expressed negative or mixed experiences with this shift. Conclusions This study provides a snapshot of Canadian patient, family and caregiver partners' perspectives on the impact of COVID‐19 on their engagement activities. Understanding how engagement unfolded during a crisis is critical for our future planning if patient engagement is to be fully integrated into the health system. Identifying how patient partners were engaged and not engaged during this time period, as well as the benefits and challenges of virtual engagement opportunities, offers instructive lessons for sustaining patient engagement, including the supports needed to engage with a more diverse set of patient, family and caregiver partners. Patient Contribution Patient partners were important members of the Canadian Patient Partner Study research team. They were engaged from the outset, participating in all stages of the research project. Additional patient partners were engaged to develop and pilot test the survey, and all survey respondents were patient, family or caregiver partners. The manuscript is coauthored by two patient partners.


| INTRODUCTION
The onset of the COVID-19 pandemic required health care systems to make significant changes very quickly to address the health and patient care needs associated with this public health crisis. All individuals working in health care systems have been impacted by these changes, including patient, family and caregiver partners who are engaged in a wide range of activities across the health system through advisory and leadership roles in governance, policy, planning and service design. The ethical and experiential aspects of the pandemic response, such as the prioritization of health care services, 1,2 the allocation of vaccines and triaging of life-saving treatment [3][4][5] and the development of visitor restriction policies, 6,7 suggest numerous opportunities to incorporate patient perspectives into health policy, planning and delivery activities. Despite this context, however, it is unclear how patient, family and caregiver partners were engaged in the system during COVID-19, and how they experienced engagement during the pandemic.
Initial reports from around the world about patient engagement activities during COVID-19 show many challenges. In France, patient partners were not included on expert committees or consulted regarding lockdown measures, 8 and in the United Kingdom, there was a dramatic decrease in the number of research funding applications that incorporated patient engagement during the pandemic. 9 Work out of Australia suggests that consumer engagement activities occurred less frequently. When they did occur, activities focused mainly on COVID-19 with other important work being cancelled. Further, the switch to virtual platforms tended to disadvantage those who had low technological literacy or income. 10 In Ontario, Canada, patient engagement within the newly established Ontario Health Teams paused or diminished during the first wave of the pandemic due to competing priorities of member organizations. 11 Additional concerns remain regarding specific groups, such as people with disabilities, who have been left out of discussions regarding COVID- 19. 12 Other examples highlight how patient engagement has continued during the COVID-19 pandemic. One Canadian health delivery organization, for example, implemented several strategies, including monthly town halls and forums in addition to their existing Patient and Family Advisory Committee meetings, to ensure patients and families were engaged throughout the pandemic. 13 Similarly, an American health organization reported on how they successfully pivoted to virtual meetings to continue the work of Patient and Family Advisory Councils (PFACs). 14 Many of these reports are single case studies that focus on a small number of personal experiences. What is unknown at this stage is how the activities and experiences of patient, family and caregiver partners, as a large group across a variety of settings, have changed due to the substantial health system shifts catalysed by the pan-  building on their lived experiences as a patient, family member or informal caregiver to inform the organization's governance or evolution. While we refer to these individuals as 'patient partners', caregivers and family members are included in this group. This was explicitly stated at the beginning of the survey. The survey drew on an extensive review of the patient partner literature (completed during a previous phase of research), existing surveys in this field and in-depth consultation and collaboration with patient partners from the Patient Advisors Network (PAN), two of whom are members of the research team. The survey was pilot-tested and revised with input from patient partners in British Columbia, Ontario, Quebec and Nova Scotia.
The survey focused on patient partner experiences, attitudes and demographics and was available in French and English. While other patient partner surveys have been conducted locally, 15 to our knowledge, this is the first survey of its kind to attempt to reach patient partners from across Canada in both official languages.

| Sample
As there is no known list of patient partners in Canada, our sampling frame was unknown at the outset of the survey. Recruitment relied on a virtual snowballing approach. 16 Members of the study team and the project's external advisory committee, comprising patient partners, engagement researchers and health system professionals, were asked to disseminate the survey invitation widely through their networks. The research team sent additional recruitment emails to health system and governmental organizations across Canada asking them to share the survey information directly with their patient partners. The survey was actively promoted on various social media platforms (Twitter, Facebook, LinkedIn) by various members of the research team at multiple points during the recruitment period. Social media posts encouraged followers to share the information through their networks. All respondents received an information letter, provided consent to participate and had an opportunity to enter a draw to win one of three $200 cash prizes. The Hamilton Integrated Research Ethics Board (HIREB) reviewed and approved this study (#10705).

| Analysis
For this paper, the descriptive analysis focuses on responses to two survey questions related to patient partner experiences during the COVID-19 pandemic. All respondents were invited to answer the question 'Has the COVID-19 pandemic had an impact on your patient partner activities?'. Those who responded 'yes' to this question were asked the open-ended question, 'Please describe how your patient partner activities have been influenced by the pandemic'. Frequencies were calculated for the initial COVID-19 question (yes/no). χ 2 tests of independence were performed to examine the relationship between the impact of COVID-19 on engagement activities and the demographic variables presented in Table 1.
We analysed the open-ended comments using a two-stage approach. First, we engaged in unconstrained deductive analysis 17 to determine the impact of COVID-19 on patient engagement.
Previously defined categories ('stopped' and 'continued') were as- signed to the open-ended responses to the second question based on how respondents described the impact of COVID-19 on their partnering activities. Just over half of the responses fit into these two categories. Our unconstrained approach was used to organize the rest of the responses into an 'other' category, which was then inductively analysed to provide further description. Within this category of responses, we used an inductive approach to conventional content analysis to organize the remaining responses (e.g., stopped then restarted, increased). Initial coding was completed by one coder (J. Y.) and then reviewed and confirmed by a second coder (L. T.).
Each response category was further analysed by one coder (L. T.) to elaborate on the data within each category, specifically related to the impact of virtual engagement on respondents. 18 French responses were translated into English for analysis purposes.

| RESULTS
The question regarding the impact of COVID-19 on patient engagement activities was completed by 533 respondents. Over three quarters of respondents (77.9%, n = 415/533) indicated that their work had been impacted by COVID-19 in some way (Table 1). Fortyone of these respondents completed the survey in French. The demographic characteristics of respondents are highlighted in Table 1.
Respondents who reported their activities were not impacted by COVID-19 were significantly more likely to indicate that they were in good or excellent health (p = .044, p < .05). No other demographic or geographic characteristics were statistically significant between those whose activities were impacted by COVID-19 and those who were not (Table 1).

| Overall experiences with engagement during COVID-19
Respondents who indicated their engagement activities had been  Through their description of the impacts of COVID-19 on their engagement work, more than half of respondents described experiencing at least a temporary decrease in the amount of patient partnering work they were involved with during the pandemic (62.5%, n = 230). This included describing decreases in the number of activities they were involved in or the frequency of these activities due to changes made by organizations (26.9%, n = 99) or personal situations (4.3%, n = 16). A small number of respondents described how their patient engagement work stopped and then resumed later in the pandemic (7.1%, n = 26), and just under a quarter of respondents described how their activities stopped and had not yet resumed (24.2%, n = 89). Others described how their engagement work remained relatively constant despite the need to move to virtual platforms and other modes of working (26.1%, n = 96) and a small number (11.4%, n = 42) reported an increase in their partnership activities during the pandemic.

| Decreased patient engagement activities
Over half (62.5%, n = 230) of the respondents who commented on how their engagement activities were impacted during the COVID-19 crisis described at least a temporary decrease in activity levels.
Respondents' comments highlighted several reasons why engagement activities decreased or stopped. Some spoke to the shifting priorities of the institution to COVID-19 response efforts as a reason: 'the healthcare system has had to focus on COVID-19 which means that a lot of other programs have been put on the backburner'.
Others highlighted the difficulty in transitioning certain engagement activities to telephone or virtual platforms as a reason for the pause.
In other cases, committees and groups continued but patient partners were not invited to participate due to a lack of access to the required technology (e.g., laptops to join zoom meetings; Wi-Fi) or an inability of the organization to provide the individuals with access (e.g., nonemployees could not access the required platforms/networks).  'My health authority has called upon patient partners more frequently during the pandemic than it did previously. It is now consulting us on a wide variety of topics irrespective of the particular committees we sit on'. Not only were some patient partners engaged more frequently during the pandemic, but it was noted that due to the speed at which things changed during this time, it was easier for some to see the impacts of their contributions on the organization: 'There is almost daily consultation with advisors and because change is happening so rapidly, we get to see how our input has influenced organizational decision making'. Loss of compensation 2.1% (4) 'Since the expense checks were, in fact, my only source of income, I lost it when things went virtual but am not eligible for any income replacement programs' Too many virtual meetings 2.1% (4) 'Another way the pandemic has affected me is that I actually am attending more meetings that I truly wish to attend. Meetings are increased (due to savings in travel time), but that means I have meetings conflicting at the same time. I am even at the point where I sometimes am attending and listening to two or three meetings at the same time even though everyone sees me online in just their meeting'

Positive experiences
Virtual engagement is fine, made things easier 17.0% (23) 'I'm actually able to better participate because I couldn't always make meetings but Zoom makes it much easier to be involved. In the past, when I would call into a meeting, it was very hard to participate and feel included…but now everyone is online, so that's a good thing' Less travel, less wasted time 7.2% (14) 'We are working remotely, which actually allows me to take on a lot more than I typically would be capable of'

| Positive experiences
For some respondents, the move to virtual engagement platforms was a positive change. It worked well and there were no concerns with it for most in this group (11.9%, n = 23). In some instances, it even facilitated their engagement activities. For example, one respondent noted that the organization they were working with found ways to engage them 'with very specific questions in mind, sometimes via text message alone', which they appreciated given the challenges of living through a pandemic, especially as a caregiver.
Increased accessibility was the other major positive impact a small group of respondents commented on (6.7%, n = 13). For patient, family and caregiver partners with caregiving responsibilities or health conditions that make travel or sitting in meetings difficult, or for those without easy or reliable access to transportation, virtual meetings made their patient engagement activities more easily accessible: 'While this may sound counterintuitive, I have been able to participate in more patient partner activities during the pandemic as so much has been done on virtual platforms. I cannot sit long these days and would not have been able to travel to conferences or annual meetings during normal times…last year I had to back out of so many meetings due to pain'.
Some respondents (7.2%, n = 14) commented on virtual engagement as a way of saving time and increasing productivity as they do 'not have to get to places physically and take all that transportation time on public transit', allowing them, in some cases, to attend more meetings and spend more time on their engagement activities.
Virtual engagement also increased the opportunities available to some patient partners (

| DISCUSSION
COVID-19 has led to numerous changes within the health system and consequently has also led to many conversations about the impact of the pandemic on patient, family and caregiver engagement. 9,10,14 There have been numerous anecdotal reports that patient, family and caregiver engagement largely stopped during the pandemic. 8,19 The results of this survey, however, suggest that while most Canadian patient, family and caregiver partners who participated were impacted by COVID-19, a significant majority (over two thirds) continued their work even if there were delays or it was reduced.
Despite continued involvement in many ways, respondents to our survey expressed frustration that they were rarely included in COVID-related committees and policy making when they felt that they could add significant value to these processes. Richards and Scowcroft highlighted the absence of those with lived experience in policy development during the outset of the pandemic and suggested that this absence reinforced the notion that patient, family and caregiver engagement, while embedded in health systems, is still seen as '"nice to have" but not essential'. 19 Some of our survey respondents echoed this feeling highlighting that, despite the work that they had put in for years prior with organizations, the fact that they were so quickly dropped when the pandemic began was a sign that they were not as valued as they once thought. If organizations are truly embedding patient, family and caregiver engagement, the expectation is that it would and should continue during times of crisis. The fact that many respondents did report that their patient engagement activities continued, even if it was in an altered way or delayed, suggests that engagement remained a priority across several organizations. Further work to understand the differences between organizations where engagement continued, as compared to those where it stopped, could reveal how to support engagement within organizations at all times in spite of disruptions, in a truly embedded way.
It is acknowledged that many individuals who become patient, family and caregiver partners do so because of a negative interaction with the health system that they want to improve for others. 20