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Using Instructional Design to Support Community Engagement in Clinical and Translational Research: a Design and Development Case

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Abstract

While community stakeholder engagement is becoming increasingly common in health care, operationalized training materials to support this learner population (community members) are scarce. Instructional design principles were used to create an Open Educational Resource (OER) to support the involvement of community stakeholders in health care research at a university health science center. Prior to the development of this project, a formal group, whose members named themselves Citizen Scientists (CSs), already existed to offer lay perspective on clinical and translational research studies. These CSs are involved in a wide range of active committees within the university’s college of medicine. The challenge of this program, however, is that the CSs require training to engage in these activities (e.g., reviewing research proposals). This design and development research case outlines the instructional design processes, and formative evaluation methods and results of the creation of an OER. While the description of the instructional design processes can be useful for similar project implementations, information on methods and results from the formative evaluation add the following benefits: (a) help community stakeholders to analyze whether projects’ goals have been met, (b) present project aspects that could be improved, and (c) support other communities by creating a model for project evaluation based on similar contexts and with similar project goals.

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Acknowledgements

Research reported in this publication was supported in part by the OneFlorida Clinical Data Network, funded by the Patient-Centered Outcomes Research Institute #CDRN-1501-26692, in part by the OneFlorida Cancer Control Alliance, funded by the Florida Department of Health’s James and Esther King Biomedical Research Program #4KB16, and in part by the University of Florida Clinical and Translational Science Institute, which is supported in part by the NIH National Center for Advancing Translational Sciences under award number UL1TR001427. The authors would like to acknowledge the effort and assistance provided by the University of Florida Citizen Scientist Program members: Anastasia Anderson, Ravi Bhosale, Shirley Bloodworth, Quintina Crawford, Christy Evans, Myrtle Graham, Claudia Harris, Nathan Hilton, Janelle Johnson, Bill Larsen, Carlos Maeztu, and Nadine Zemon.

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Correspondence to Albert D. Ritzhaupt.

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The content is solely the responsibility of the authors and does not necessarily represent the official views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology, the OneFlorida Clinical Research Consortium, the University of Florida’s Clinical and Translational Science Institute, the Florida Department of Health, or the National Institutes of Health.

Appendices

Appendix 1

Individual interview questions used with three CSs were:

  1. 1)

    How long have you been a CS?

  2. 2)

    What was your primary motivation for joining this program?

  3. 3)

    What were the most difficult things to learn in the program thus far?

  4. 4)

    What were the easiest things in the program to learn thus far?

  5. 5)

    How have you used the information you have learned in the program? Can you provide us an example?

  6. 6)

    What types of problems have you faced in the work as a CS? How have you solved these problems?

  7. 7)

    What advice would you provide a new CS joining the program?

  8. 8)

    Do you have internet access in your house?

  9. 9)

    What types of information in the CS Program would you like to be presented using text? Why?

  10. 10)

    What types of information in the CS Program would you like to be presented using video? Why?

  11. 11)

    Have you taken an online course (e.g., MOOC)? If so, how did you like it?

  12. 12)

    In general, do you like to use your computer to read or watch videos?

  13. 13)

    When you are looking for specific information in the internet, do you prefer that this information be presented through text or video?

  14. 14)

    How do you look for the News (e.g., listen to NPR/radio, watch TV, read newspaper, go online to read, or go online to watch videos)?

  15. 15)

    When using a computer, are there any technical or usability challenges you face (e.g., difficulty finding specific information in a text or website)?

Appendix 2

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Appendix 3

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Appendix 4

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Valle, N., Brishke, J., Ritzhaupt, A.D. et al. Using Instructional Design to Support Community Engagement in Clinical and Translational Research: a Design and Development Case. J Form Des Learn 2, 20–35 (2018). https://doi.org/10.1007/s41686-018-0018-4

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  • DOI: https://doi.org/10.1007/s41686-018-0018-4

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