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. 2025 Jul 31:18:2529-2537.
doi: 10.2147/RMHP.S512398. eCollection 2025.

Engaging Essential Patient Support Personnel in Research as Patient Partners: A Survey Study

Christine Skubisz  1 , Shayna DeRosa  2 , Carly R Pacanowski  2
Affiliations

Engaging Essential Patient Support Personnel in Research as Patient Partners: A Survey Study

Christine Skubisz et al. Risk Manag Healthc Policy. .

Abstract

Introduction: Patient engagement in research is a collaborative interaction between patients and researchers throughout the entire research process. Healthcare workers provide care for others, but are the patients themselves in areas of workplace safety and mental health. Essential patient support personnel working on the front line of healthcare are particularly vulnerable but have an underrepresented voice in the research conducted about their health and work.

Methods: To explore this topic, a survey study of essential patient support personnel (N=42), guided by the Integrated Model of Behavioral Prediction, measured attitudes about engagement, behavioral intentions, and past engagement behavior. Skills and constraints, predictors of behavioral intentions for engagement in the model, were also assessed.

Results: Results showed that essential patient support personnel had positive attitudes and positive behavioral intentions to engage in research, yet only two participants had engaged in research in the past. Participants reported the most positive behavioral intentions to contribute at the preparation stage of research. Overwhelmingly, participants reported that the most important skill essential patient support personnel bring to a research team is their first-hand experience. Significant constraints to engagement included a lack of time, insufficient compensation, and job burnout.

Conclusion: Efforts to bolster patient engagement in research should focus on increasing the skills necessary for study execution (eg, study design and data analysis) and removing constraints to contribution (eg, providing appropriate monetary compensation, being mindful of time and heavy work schedules).

Keywords: healthcare workers; integrated model of behavioral prediction; patient centered outcomes research; patient engagement in research; survey research.

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Conflict of interest statement

The authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
Integrated Model of Behavioral Prediction.
See this image and copyright information in PMC

References

    1. Forsythe LP, Carman KL, Szydlowski V, et al. Patient engagement in research: early findings from the patient-centered outcomes research institute. Health Aff. 2019;38(3):359–367. doi: 10.1377/hlthaff.2018.05067 - DOI - PubMed
    1. Harrington RL, Hanna ML, Oehrlein EM, et al. Defining patient engagement in research: results of a systematic review and analysis: report of the ISPOR patient-centered special interest group. Value Health. 2020;23(6):677–688. doi: 10.1016/j.jval.2020.01.01 - DOI - PubMed
    1. Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–1166. doi: 10.1111/hex.12090 - DOI - PMC - PubMed
    1. Finney Rutten LJ, Morris MA, Schrader LM, et al. Approaching patient engagement in research: what do patients with cardiovascular disease think? Patient Prefer Adhere. 2015;1061–1064. doi: 10.2147/PPA.S84980 - DOI - PMC - PubMed
    1. Fergusson D, Monfaredi Z, Pussegoda K, et al. The prevalence of patient engagement in published trials: a systematic review. Res Involv Engagem. 2018;4:1–9. doi: 10.1186/s40900-018-0099-x - DOI - PMC - PubMed

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