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Project BRIDGE: Building Research Initiatives by Developing Group Effort

Jackie Hinckley1, Alejandro E. Brice2 and Anthony Pak Hin Kong3*
  • 1 Nova Southeastern University, United States
  • 2 University of South Florida, United States
  • 3 University of Central Florida, United States

Introduction. When patients or others who will be affected by research are incorporated into planning, prioritizing, or preparing research methods or activities, research is improved in quality, relevance, and efficiency, among other benefits (Ahmed & Palermo, 2010; Oliver, Armes, & Gyte, 2009; Tallon, Chard & Dieppe, 2000; IOM, 2011; Tallon, Chard, & Dieppe, 2000). Recommended practices for including consumers in research (Dudley et al, 2015; Elberse, Caron-Flinterman, & Browerse, 2011; Panofsky, 2011) involve 1) preparing patient partners and researchers beforehand in separate meetings, and 2) maintaining ongoing relationships between informed researchers and patient partners through regular meetings, workshops, or conferences. The “Project BRIDGE: Building Research Initiatives by Developing Group Effort“ was funded through an Engagement Award of the Patient-Centered Outcomes Research Institute (PCORI) to apply these principles to the process of creating research collaborations between researchers, clinicians, people with aphasia (PWAs), and their families. The aim of this presentation is to describe the methods we applied to prepare researchers and consumers to collaborate, and to describe the immediate outcomes of the pre-conference training and the conference. In addition, the experiences and perspectives of project participants would be shared, along with discussion on future steps for collaborative research in aphasia. Methods. Webinar preparation for all participants were three webinars for PWAs and their families that included understanding the purposes of research, basic scientific method, questions to ask a researcher, and roles of consumers and researchers in a collaborative project. The three webinars that were developed for researchers included models for collaboration, resources and techniques for facilitating collaborative research, and roles of consumers and researchers in a collaborative project. The two-day conference was designed based on an Appreciative Inquiry approach. Results. The webinars were publicly available online and participants were asked to complete an online survey for each webinar. Thirty-three PWAs, 25 family members, 18 clinicians, and 26 researchers.at the live conference joined the two-day conference. At the end, 11 research teams (each included at least one researcher, one PWA and family member who generated a completely formed research question along with several action steps to take in the immediate few months after the conference) were formed. Detailed summary of the experiences from the project groups will be provided during the presentation (see examples in Table 1). Discussion. Including patient partners into research priorities and planning has been accomplished across a variety of health domains in the United States, but this is the first organized national effort to support the inclusion of PWA and their families as active partners in the research process. Initial immediate outcomes suggest that the methods used (webinar preparation, small group work and aphasia-friendly principles) supported the creation of collaborative research teams. These principles will form the basis of recommendations for future work in the area.

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Acknowledgements

This presentation was partially funded through a Patient-Centered Outcomes Research institute (PCORI) Eugene Washington PCORI Engagement Award (Contract # EAIN-7111).

References

Ahmed, S. M. & Palermo, A-G.S. (2010). Community engagement in research: Frameworks for education and peer review. American Journal of Public Health, 100, 1380—1387. Dudley, L., Gamble, C. Allam, A., Bell, P., Buck, D., Goodare, H., Hanley, B., Preston, J., Walker, A., Williamson, P. & Young, B. (2015). A little more conversation please? Qualitative study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials. Trials, 16, 190. Elberse, J. E., Caron-Flinterman, J. F., & Browerse, J. E. W. (2011). Patient-expert partnerships in research: How to stimulate inclusion of patient perspectives. Health Expectations, 14, 225-239. Hinckley, J., Boyle, E., Lombard, D., & Bartels-Tobin, L. (2014). Towards a consumer-informed research agenda for aphasia: preliminary work. Disability and rehabilitation, 36(12), 1042-1050. Institute of Medicine, (2011). Public Engagement and Clinical Trials: New Models and Disruptive Technologies – Workshop Summary. Available at: http://www.nationalacademies.org/hmd/Reports/2011/Public-Engagement-and-Clinical-Trials-New-Models-and-Disruptive-Technologies-Workshop-Summary.aspx Oliver, S., Armes, D. G., & Gyte, G. (2009). Public involvement in setting a national research agenda: A mixed methods evaluation. Patient, 2, 179-190. Panofsky, A. (2011). Generating sociability to drive science: Patient advocacy organizations and genetics research. Social Studies of Science, 4, 31-57 Tallon, D., Chard, J. & Dieppe, P. (2000). Relation between agendas of the research community and the research consumer. Lancet, 355, 2037-2040. Turnbull, A. P., Friesen, B. J., & Ramirez, C. (1998). Participatory action research as a model for conducting family research. Research and Practice for Persons with Disabilities, 23, 178-188.

Keywords: Aphasia, collaboration, Research, Consumers, researchers

Conference: Academy of Aphasia 57th Annual Meeting, Macau, Macao, SAR China, 27 Oct - 29 Oct, 2019.

Presentation Type: Poster presentation

Topic: Not eligible for student award

Citation: Hinckley J, Brice AE and Kong A (2019). Project BRIDGE: Building Research Initiatives by Developing Group Effort. Front. Hum. Neurosci. Conference Abstract: Academy of Aphasia 57th Annual Meeting. doi: 10.3389/conf.fnhum.2019.01.00030

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Received: 05 May 2019; Published Online: 09 Oct 2019.

* Correspondence: Dr. Anthony Pak Hin Kong, University of Central Florida, Orlando, United States, akong@hku.hk