Skip to main content Accessibility help
×
Home

Using REDCap to track stakeholder engagement: A time-saving tool for PCORI-funded studies

  • Sabina B. Gesell (a1), Jacqueline R. Halladay (a2), Laurie H. Mettam (a3), Mysha E. Sissine (a4), B. Lynette Staplefoote-Boynton (a5) and Pamela W. Duncan (a4)...

Abstract

Background:

Research Electronic Data Capture (REDCap) is a secure, web-based electronic data capture application for building and managing surveys and databases. It can also be used for study management, data transfer, and data export into a variety of statistical programs. REDcap was developed and supported by the National Center for Advancing Translational Sciences Program and is used in over 3700 institutions worldwide. It can also be used to track and measure stakeholder engagement, an integral element of research funded by the Patient-Centered Outcomes Research Institute (PCORI). Continuously and accurately tracking and reporting on stakeholder engagement activities throughout the life of a PCORI-funded trial can be challenging, particularly in complex trials with multiple types of engagement.

Methods:

In this paper, we show our approach for collecting and capturing stakeholder engagement activities using a shareable REDCap tool in one of the PCORI’s first large pragmatic clinical trials (the Comprehensive Post-Acute Stroke Services) to inform other investigators planning cluster-randomized pragmatic trials. Benefits and challenges are highlighted for researchers seeking to consistently monitor and measure stakeholder engagement.

Conclusions:

We describe how REDCap can provide a time-saving approach to capturing how stakeholders engage in a PCORI-funded study and reporting how stakeholders influenced the study in progress reports back to PCORI.

  • View HTML
    • Send article to Kindle

      To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

      Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

      Find out more about the Kindle Personal Document Service.

      Using REDCap to track stakeholder engagement: A time-saving tool for PCORI-funded studies
      Available formats
      ×

      Send article to Dropbox

      To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

      Using REDCap to track stakeholder engagement: A time-saving tool for PCORI-funded studies
      Available formats
      ×

      Send article to Google Drive

      To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

      Using REDCap to track stakeholder engagement: A time-saving tool for PCORI-funded studies
      Available formats
      ×

Copyright

This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

Corresponding author

Address for correspondence: S. B. Gesell, PhD, Department of Social Sciences and Health Policy and Department of Implementation Science, Wake Forest School of Medicine, One Medical Center Boulevard, Winston-Salem, NC27157, USA. Email: sgesell@wakehealth.edu

References

Hide All
1.Selby, JV, Beal, AC, Frank, L. The Patient-Centered Outcomes Research Institute (PCORI) national priorities for research and initial research agenda. JAMA 2012; 307: 15831584.
2.Forsythe, LP, et al. Patient engagement in research: early findings from the Patient-Centered Outcomes Research Institute. Health Affairs (Millwood) 2019; 38: 359367.
3.Forsythe, LP, et al. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. Journal of General Internal Medicine 2016; 31: 1321.
4.Levitan, B, et al. Assessing the financial value of patient engagement: a quantitative approach from CTTI’s patient groups and clinical trials project. Therapeutic Innovation & Regulatory Science 2018; 52: 220229.
5.Concannon, TW, et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. Journal of General Internal Medicine 2014; 29: 16921701.
6.Deverka, PA, et al. Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement. Journal of Comparative Effectiveness Research 2012; 1: 181194.
7.Duncan, PW, et al. The Comprehensive Post-Acute Stroke Services (COMPASS) study: design and methods for a cluster-randomized pragmatic trial. BMC Neurology 2017; 17: 133.
8.Andrews, JE, et al. Ensuring respect for persons in COMPASS: a cluster randomised pragmatic clinical trial. Journal of Medical Ethics 2018; 44: 560566.
9.Gesell, SB, et al. Methods guiding stakeholder engagement in planning a pragmatic study on changing stroke systems of care. Journal of Clinical and Translational Science 2017; 1: 121128.
10.Harris, PA, et al. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics 2009; 42: 377381.
11.Bronfenbrenner, U. Ecological systems theory. In: Vasta, R, ed. Annals of Child Development: Vol. 6. Six Theories of Child Development: Revised Formulations and Current Issues. Greenwich, CT: JAI Press, 1989, pp. 187249.
12.Domecq, JP, et al. Patient engagement in research: a systematic review. BMC Health Services Research 2014; 14: 89.
13.Davies, P, et al. Implementing an organised cervical screening programme in the Republic of Moldova-Stakeholder identification and engagement. Cancer Epidemiology 2017; 50: 272277.
14.Sheridan, S, et al. The PCORI engagement rubric: promising practices for partnering in research. Annals of Family Medicine 2017; 15: 165170.
15.Bradley, EH, Curry, LA, Devers, KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Services Research 2007; 42: 17581772.

Keywords

Type Description Title
UNKNOWN
Supplementary materials

Gesell et al. supplementary material
Gesell et al. supplementary material 1

 Unknown (17 KB)
17 KB
PDF
Supplementary materials

Gesell et al. supplementary material
Gesell et al. supplementary material 2

 PDF (106 KB)
106 KB
PDF
Supplementary materials

Gesell et al. supplementary material
Gesell et al. supplementary material 3

 PDF (594 KB)
594 KB

Using REDCap to track stakeholder engagement: A time-saving tool for PCORI-funded studies

  • Sabina B. Gesell (a1), Jacqueline R. Halladay (a2), Laurie H. Mettam (a3), Mysha E. Sissine (a4), B. Lynette Staplefoote-Boynton (a5) and Pamela W. Duncan (a4)...

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed.