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

Cadel, Lauren; Marcinow, Michelle; Sandercock, Jane; Dowedoff, Penny; Guilcher, Sara; Maybee, Alies; Law, Susan; Kuluski, Kerry

doi:10.1371/journal.pone.0257880

Cited by 30 publications

(40 citation statements)

References 53 publications

(164 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…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.…”

Section: Discussionsupporting

confidence: 76%

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

Tripp

Vanstone

Canfield

et al. 2022

Health Expectations

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionsupporting

confidence: 76%

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

Tripp

Vanstone

Canfield

et al. 2022

Health Expectations

View full text Add to dashboard Cite

show abstract

“…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-…”

Section: Discussionmentioning

confidence: 94%

“…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 …”

Section: Discussionmentioning

confidence: 99%

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

Fredriksson

2022

Health Expectations

View full text Add to dashboard Cite

Background Patient and public involvement in healthcare can be particularly challenging during crises such as the COVID‐19 pandemic. Objective The aims of the study, which focuses on COVID‐19 testing in Sweden, were to explore (1) how, or to what extent, patients and members of the public were involved in decisions about the organization of COVID‐19 testing during the first year of pandemic and (2) whether this was seen as feasible or desirable by regional and national stakeholders. Methods A qualitative interview study was conducted with key organizational stakeholders at three national agencies and within three Swedish regions (n = 16). Results There had been no patient and public involvement activities in the area of COVID‐19 testing. The regions had, however, tried to respond to demands or critiques from patients and the public along the way and to adapt the services to respond to their preferences. The need for rapid decision‐making, the uncertainty about whom to involve, as well as a hesitation about the appropriateness of involving patients and the public contributed to the lack of involvement. Conclusion Future studies on patient and public involvement during crises should address what structures need to be in place to carry out involvement successfully during crises and when to use activities with varying degrees of power or decision‐making authority for patients and members of the public. Patient or Public Contribution Fifteen members of the public contributed with short reflections on the study findings.

show abstract

“…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.…”

Section: Discussionmentioning

confidence: 99%

“…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 ].…”

Section: Discussionmentioning

confidence: 99%

Impact of the COVID-19 Pandemic on Cancer Patient Educators

et al. 2022

View full text Add to dashboard Cite

Patient education (PE) is vital in reducing anxiety, increasing satisfaction with treatment, helping with self-management, and creating a sense of control for cancer patients. Patients access much of their material from health care providers through in-person visits, patient libraries, and in-person classes. Due to reductions in in-person visits throughout the pandemic, we sought to understand how PE programs responded under varying levels of COVID-19 restrictions to meet the information needs of patients and families. A cross-sectional survey was distributed to members of the Cancer Patient Education Network (CPEN) and the Health Care Education Association (HCEA) via the respective listservs. The survey consisted of five sections that included closed and opened questions. Participants were asked questions to describe their PE programs and how their duties were affected during the pandemic. Forty-two CPEN members completed the survey ( N = 42, 66%) with a 35% response rate and a 55% completion rate, and 19 HCEA members completed the survey ( N = 19, 30%) with a 5% response rate and 16% completion rate. The majority of staff surveyed were not furloughed ( N = 57/64, 89%). Just under half reported a change in daily PE program activities ( N = 23/52, 44%) and most reported a change in developing PE materials (e.g., pamphlets) ( N = 10/26, 63%), finding information for patients/families ( N = 11/19, 58%), and delivering classes ( N = 12/21, 57%). COVID-19 has ushered in a new era in the delivery of PE with the rapid deployment of digital cancer patient education. Results can inform future directions for the delivery of PE post-pandemic.

show abstract

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

Cited by 30 publications

References 53 publications

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

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

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

Impact of the COVID-19 Pandemic on Cancer Patient Educators

Contact Info

Product

Resources

About