Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Abstract

Background Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

Studying How Patient Engagement Influences Research: A Mixed Methods Study

“…We collected quantitative data through surveys [ 41 ] and qualitative data through observation [ 40 ] to address the gaps in the survey data. Our observation data augmented our understanding of what the survey numbers truly mean, including their implications.…”

“…), how convenient it was for them to work on the project, the support they received, the benefits of their involvement, and how satisfied they were with the initiative. We complemented the survey data collection with observation [ 38 – 41 ] of PE in the two groups. Due to COVID-19 and the different locations of the project group members, observation was undertaken online and included the collection of descriptive information (factual data of online discussions and chats), and reflective information (thoughts, ideas, and questions).…”

Key ingredients for successful collaboration in health research: perspectives of patient research partners

“…We, the first two authors of this paper, had a unique opportunity to collaborate as patient research partners in a qualitative research study aimed at understanding how patients make decisions about tapering of biologics for inflammatory bowel disease (IBD). This study was part of an overarching investigation aimed at exploring the impact of patient engagement on research design, approach and outputs in the context of qualitative research [ 3 – 5 ]. The research team for the overarching investigation formed two distinct research groups to study patient engagement, one group that was led by a PRP and one that was led by an academic researcher (see Fig.…”

Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives

“…The concept, rooted in HIV/AIDS research and the disability rights movement, asserts that individuals affected by publicly funded research have the right to actively participate in it (Shimmin et al, 2017 ). It has also been suggested to lead to better quality research with greater impact (Domecq et al, 2014 ; Wilson et al, 2015 ; Chudyk et al, 2022 ; Marshall et al, 2023 ). In the context of patient engagement in research, people with lived experience are taking on roles such as co-applicants on grants, research team members, co-authors on papers and others (Bethell et al, 2018 ; Snowball et al, 2022 ).…”