Initiative to Support Patient Involvement in Research (INSPIRE)
As patients, clinicians, and researchers, our team represents diverse experiences with and knowledge of patient‐researcher collaborations in healthcare research. We recognized an opportunity to learn from each other and the broader patient‐centered outcomes research community to develop tools, resources, and best practices to support future successful collaborative efforts.
The resulting Initiative to Support Patient Involvement in Research (INSPIRE) reflected what our group of patients, clinicians, and researchers saw as important and needed work to continue making the patient’s voice central to research with the goal of creating high quality research that is accessible to people making healthcare decisions.
The objective of INSPIRE was to build capacity to facilitate patient-centered outcomes research (PCOR) training, support, and networking across diverse areas of healthcare for both patients and researchers. INSPIRE was a 4-phase project to gather information on the experiences and needs of patients and researchers actively partnering across the Pacific Northwest region of the United States.
Four Phases of INSPIRE:
Progress & Results to Date
Phase I: Interviews
We spoke with 37 people (23 researchers and 14 patient/family partners) partnering on 23 PCORI-funded projects in the Pacific Northwest. Diverse approaches to patient‐researcher partnerships were described including both consultative and collaborative approaches. The interviews yielded important findings on what makes partnerships successful as well as what is still needed in terms of training and support.
Phase II: Environmental Scan
We identified nearly 200 existing trainings, tools, and resources being used to support patient-researcher partnerships from over 60 sponsoring organizations. When considering our Phase I interview findings in context of the tools and resources identified in Phase II, we found that many of the gaps in support identified by interviewees may be filled by existing tools and resources.
Phase III: Community Workshop
Over 50 patients and researchers convened in Seattle, WA for the Phase III Workshop, which took place on July 18 & 19, 2016, allowed the PCOR community to share knowledge and experiences with others who may learn from them and prioritize needs for partnership support.
Phase IV: Tool Development & Web Portal
The final phase of the INSPIRE initiative focused on developing communication and dissemination pathways to make existing knowledge and resources available to the PCOR community in the Pacific Northwest and beyond. Our INSPIRE Research Portal, InspireResearch.org, provides easy access to tools and resources for the patient-centered outcomes research community. It features:
- Almost 100 resources from 70 organizations including programs, guides, trainings, videos, and websites
- 19 topics ranging from budgeting to research 101
Access our web portal of tools and resources to support patient-researcher partnerships.
This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Program Award (0067-UWASH).