Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Dec 2;7(2):177-187.
doi: 10.1093/jcag/gwad045. eCollection 2024 Apr.

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

Deborah A Marshall  1   2 , Nitya Suryaprakash  3 , Stirling Bryan  3   4 , Karis L Barker  1 , Gail MacKean  1 , Sandra Zelinsky  5   2 , Tamara L McCarron  1 , Maria J Santana  6   5 , Paul Moayyedi  2   7 , Danielle C Lavallee  3   8
Affiliations

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

Deborah A Marshall et al. J Can Assoc Gastroenterol. .

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.

Keywords: evaluation; impact of patient engagement; patient engagement in research; survey methods; value of patient engagement.

PubMed Disclaimer

Conflict of interest statement

Deborah A. Marshall discloses consulting fees from the Office for Health Economics, Novartis, and Analytica during the conduct of this study. She also received support from Illumina for travel expenses to attend a meeting. Nitya Suryaprakash and Karis L. Barker received reimbursement of expenses related to conference attendance from the SPOR IMAGINE Chronic Disease Network. All other authors declare no conflicts of interest relevant to the content of this article.

Figures

Figure 1.
Figure 1.
Timing of survey administration and tools used.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Harrington Rachel L, Hanna Maya L, Oehrlein Elisabeth M, Camp Rob, Wheeler Russell, Cooblall Clarissa, Tesoro Theresa, et al. . “Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group.” Value in Health 23, no. 6 (2020): 677–88. 10.1016/j.jval.2020.01.019 - DOI - PubMed
    1. de Wit Maarten, Abma Tineke, Koelewijn-van Loon Marije, Collins Sarah, Kirwan John.. “Involving Patient Research Partners has a Significant Impact on Outcomes Research: A Responsive Evaluation of the International OMERACT Conferences.” British Medical Journal Open 3, no. 5 (2013): e002241. 10.1136/bmjopen-2012-002241 - DOI - PMC - PubMed
    1. Brett Jo, Staniszewska Sophie, Mockford Carole, Herron-Marx Sandra, Hughes John, Tysall Colin, Suleman Rashida.. “Mapping the Impact of Patient and Public Involvement on Health and Social Care Research: A Systematic Review.” Health Expectations : An International Journal of Public Participation in Health Care and Health Policy 17, no. 5 (2014): 637–50. 10.1111/j.1369-7625.2012.00795.x - DOI - PMC - PubMed
    1. Forsythe Laura, Heckert Andrea, Margolis Mary Kay, Schrandt Suzanne, Frank Lori.. “Methods and Impact of Engagement in Research, from Theory to Practice and Back Again: Early Findings from the Patient-Centered Outcomes Research Institute.” Quality of Life Research 27, no. 1 (2018): 17–31. 10.1007/s11136-017-1581-x - DOI - PMC - PubMed
    1. Merker Vanessa L, Hyde Justeen K, Herbst Abigail, Solch Amanda K, Mohr David C, Gaj Lauren, Dvorin Kelly, Dryden Eileen M.. “Evaluating the Impacts of Patient Engagement on Health Services Research Teams: Lessons from the Veteran Consulting Network.” Journal of General Internal Medicine 37, no. Suppl 1 (2022): 33–41. 10.1007/s11606-021-06987-z - DOI - PMC - PubMed

LinkOut - more resources