As a patient-oriented research network, we’re always looking for ways to improve our level of engagement and collaboration with patient-partners.
To better understand how patient engagement has unfolded across our network between 2018 and 2020, we asked our members to fill out a series of online surveys. Thanks to the input of hundreds, we can now share our preliminary findings from these surveys in a new report entitled Stakeholder Engagement in the CHILD-BRIGHT Network, 2018-2020. This constitutes Part 1 of a three-part series on patient engagement prepared by the CHILD-BRIGHT Network's Measuring Patient Engagement Working Group, a collaborative group of members from our Knowledge Translation and Citizen Engagement programs.
In Part 2 and 3 of this series, we will share the results of our survey about engagement during the COVID-19 pandemic and of a series of interviews with our network members about patient engagement, respectively.
Here are some key findings:
In 2018, 2019, and 2020, researchers, patient-partners (including parents and youth), trainees, and committee members completed the Community-Based Participatory Research (CBPR) online questionnaire.
In 2018, based on the responses of 167 network members, we found:
Eighty-six percent of researchers felt that they engaged with patient-partners in their CHILD-BRIGHT research to a moderate or great extent
Almost all patient-partners said they felt comfortable sharing their opinions with CHILD-BRIGHT (91%)
Most patient-partners felt they had a true partnership with the research project or committee with which they were involved (83%), that they were satisfied with their level of involvement (84%), and that there were high levels of trust (88%)
The highest levels of involvement occurred in areas of developing research questions or deciding on issues to research.
In 2019, based on the responses of 92 network members, we found:
All researchers felt that they had engaged to a great degree with patient-partners.
All patient-partners said they felt comfortable sharing their opinions. For instance, 81% agreed that their engagement represented a true partnership, and 89% noted that they were satisfied with their level of involvement. The highest level of involvement was in developing research questions.
In 2020, based on the responses of 62 members, we found:
All patient-partners reported high levels of trust and noted being satisfied with their level of involvement, with the highest level of patient-partner involvement occurring in the areas of creating research instruments or guidelines, and in disseminating or sharing findings.
Looking at the responses over the years, results were consistently very positive. The pattern showed growing patient engagement and a deepening of the quality of the partnerships.
“Even though the research questions and ideas were set four years ago, patients still feel like they are providing input into the project as it evolves. And some projects are making changes based on that patient input! The fact that every single patient-partner surveyed in 2019 felt comfortable sharing their opinion goes a long way to showing the trust that has been built in the CHILD-BRIGHT projects.”
In 2020, we also introduced a new online survey, the Public and Patient Engagement Evaluation Tool (PPEET) to further enrich our understanding of patient engagement. A total of 105 network members responded to this survey. Overall, they rated patient engagement and its impacts highly, especially within research project teams. Researchers, committee members, and patient-partners all reported high levels of satisfaction with patient engagement in the network.
In particular, patient-partners noted that early involvement helped enable greater impact on the research project and its advancement, and that regular and detailed communication kept them engaged. Several said that their engagement had deepened over time.
On the other hand, we found that greater diversity (e.g. more fathers and people from a greater range of ethnic and racial backgrounds) is needed. In some instances, greater role clarity for patient-partners would be beneficial.
In brief, our findings to date suggest that we are effectively implementing strategies for authentic and impactful patient-oriented research. Overall, patient-partners are satisfied with their level of engagement in the network’s research and governance.
To gain more insight on what we learned from these surveys, consult the preliminary report; take a look at the infographic summarizing these key findings; or familiarize yourself with the patient engagement best practices we recommend for researchers and patient-partners.
