A scoping review of patient engagement activities during COVID-19: More consultation, less partnership

Abstract

Background The COVID-19 pandemic has had a devastating impact on healthcare systems and care delivery, changing the context for patient and family engagement activities. Given the critical contribution of such activities in achieving health system quality goals, we undertook to address the question: What is known about work that has been done on patient engagement activities during the pandemic? Objective To examine peer-reviewed and grey literature to identify the range of patient engagement activities, broadly defined (inclusive of engagement to support clinical care to partnerships in decision-making), occurring within health systems internationally during the first six months of the COVID-19 pandemic, as well as key barriers and facilitators for sustaining patient engagement activities during the pandemic. Methods The following databases were searched: Medline, Embase and LitCOVID; a search for grey literature focused on the websites of professional organizations. Articles were required to be specific to COVID-19, describe patient engagement activities, involve a healthcare organization and be published from March 2020 to September 2020. Data were extracted and managed using Microsoft Excel. A content analysis of findings was conducted. Results Twenty-nine articles were included. Few examples of more genuine partnership with patients were identified (such as co-design and organizational level decision making); most activities related to clinical level interactions (e.g. virtual consultations, remote appointments, family visits using technology and community outreach). Technology was leveraged in almost all reported studies to interact or connect with patients and families. Five main descriptive categories were identified: (1) Engagement through Virtual Care; (2) Engagement through Other Technology; (3) Engagement for Service Improvements/ Recommendations; (4) Factors Impacting Patient Engagement; and (5) Lessons Learned though Patient Engagement. Conclusions Evidence of how healthcare systems and organizations stayed connected to patients and families during the pandemic was identified; the majority of activities involved direct care consultations via technology. Since this review was conducted over the first six months of the pandemic, more work is needed to unpack the spectrum of patient engagement activities, including how they may evolve over time and to explore the barriers and facilitators for sustaining activities during major disruptions like pandemics.

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

“…Many respondents saw virtual engagement as being challenging, especially because of the access issues presented by technology and the loss of social contact. This echoes what has been seen in the literature, with technological barriers posing issues for patient engagement, both within engagement in direct care and in service improvements/recommendations 23 . Respondents, however, also identified some important benefits.…”

Patient and public involvement in the build‐up of COVID‐19 testing in Sweden

“…de Graaff et al 28 3,30 It could also address equity challenges in the use of technology to carry out PPI during crises. 18 Lastly, there are some limitations to this study. Because the interviews were carried out during a time of heavy workload of potential respondents (the third wave), the number of respondents was relatively small and had to be drawn from regions where it was pos-…”

“…These study could address if less comprehensive involvement activities can fill important functions during crises or if it requires long‐standing public consultation processes that build trust and capacity and that keep lines of communication open 3,30 . It could also address equity challenges in the use of technology to carry out PPI during crises 18 …”

Impact of the COVID-19 Pandemic on Cancer Patient Educators

“…For example, with the rapid deployment to online cancer information, evaluating the positive and negative impacts on patients requires careful consideration. Online content can create more equitable access for those who may not be able to attend in-person education sessions, while being a potential barrier for others who have limited digital literacy or may not have access to web-based platforms [ 24 ]. The type of impact these shifts in activities have had on patient educators over the course of the pandemic is also of interest.…”

“…Currently, it is unknown how many educators will continue to work remotely after it is considered safe to go back to work. And if many do continue to work remotely, consideration may be given as to whether something will be lost without in-person engagement with patients [ 24 , 25 ]. Face-to-face reference interviews are one way patient educators build rapport with patients in order to best serve their needs and “can be some of the most enriching and rewarding parts of this work” [ 26 ].…”