Results of a report published by CERTAIN’s Initiative to Support Patient Involvement in Research (INSPIRE) yielded a number of important findings on what makes patient-researcher partnerships successful as well as what is still needed in terms of training and support. The authors also identified recommendations for supporting these partnerships.
Background
Patients are becoming more involved in efforts to improve the healthcare system by becoming active partners not only in their own care, but also in planning and conducting research. Patient partners help guide researchers in creating the questions to be studied, deciding what populations to look at, and focusing on the outcomes that patients care about most. The goal of these patient-researcher collaborations is to create research that has a real-world impact and helps patients make better-informed healthcare decisions.
INSPIRE, funded by the Patient-Centered Outcomes Research Institute (PCORI), aims to build capacity to support patient-researcher partnerships by gathering information on the experiences and needs of patients and researchers actively partnering across the Pacific Northwest. The report is the result of Phase I of the project, which involved interviews with 23 researchers and 14 patients partnering on 23 different PCORI-funded projects.
“The Phase I report served as the foundation for discussions about what is most needed to support both patients and researchers in effective collaborations,” says Danielle Lavallee, PharmD, PhD, lead of the CERTAIN Patient Advisory Network. “Learning from the community about experiences building patient-researcher partnerships allows an opportunity to identify best practices and common challenges that need to be addressed.”
Results
Key findings include both patient and researcher motivations for getting involved in PCORI-funded research as well as challenges of involvement. Researchers reported that patient engagement offers them the opportunity to make research more relevant, understand the effects of research from the patient perspective, and help share research findings with the community. Patient partners expressed a variety of reasons for getting involved, including the opportunity to improve healthcare, but the ability to ensure that research remains focused on patient care and creating actionable findings was frequently expressed as a primary motivation.
“Reading the initial interviews, I was surprised to realize that many of the challenges and successes identified by patient partners and researchers were the same, even though they were approaching them from different perspectives,” says Johanna Lindsay, INSPIRE Steering Committee member and Vice President of Programs at the Arthritis Foundation Great West Region. “Having all of these voices at the table means that this project has the potential to have a real impact on how successfully we collectively do patient-centered research.”
Recommendations
The report made a number of recommendations for supporting patient-researcher partnerships, including:
- Create listservs or communities specific to patient engagement where experiences, challenges, and successes can be shared and feedback can be gathered
- Provide access to information about tools and trainings developed (or in development) as part of other PCORI-funded projects to reduce rework or duplicative efforts of other research teams (perhaps a central repository of tools)
- Recognize the time and effort involved in patient engagement through expanded budget or timeline from funding announcement to proposal due date
- Allow time in the proposal-writing or immediate post-funding phase for co-planning or developing of engagement plans
The INSPIRE team is currently working on the final phase of the INSPIRE initiative, which focuses on making existing knowledge and resources available to patients and researchers partnering on research projects. A web portal of tools and resources is slated to launch at the end of February 2017.
Download the Phase I Report to read more about these findings, and learn more about the INSPIRE initiative on our INSPIRE web page.