When researchers partner with patients and other stakeholders in patient-centered research, the relationships can present challenges and opportunities for growth on both sides. PCORI hosted a webinar this month that addressed these challenges and presented strategies to help researchers and partners engage in research more successfully.
Researchers and partners have identified strategies to overcome barriers that arise during work together. PCORI surveys awardees and partners periodically throughout the research process. The following list highlights just a few of the strategies that awardees and partners have identified:
- Appointing dedicated staff to manage engagement between researchers and partners
- Engaging partners early and consistently
- Orienting, training, and offering ongoing capacity-building opportunities
- Using plain language
- Creating a supportive and respectful environment
- Communicating with partners about how their contributions have shaped the study
According to surveys about PCORI-funded project experiences, an example of difficulties for partners—who can include patients, caregivers, and community partners—is understanding the language of research. For instance, we’ve heard from patient partners that they can get confused by acronyms or technical terms that researchers often use when speaking. Strategies for overcoming this language barrier include using plain language and offering training to understand research terminology.
Another challenge that awardees face is integrating diverse partner perspectives, experiences, and education levels into projects. This work involves translating and reconciling different points of view into recommendations with the potential to impact study design. Strategies for awardees to overcome this challenge include facilitating open discussions, being sensitive to partners’ needs, and creating a supportive and respectful environment.
To learn more about overcoming some of the challenges that researchers and partners may face, view the webinar here.
The webinar on strategies to overcome engagement-related challenges was the third in a series that PCORI has hosted to highlight engagement in PCORI research and share practical information from awardees and partners.
The second webinar focused on the ways patients and other stakeholder partners engage in PCORI research and how that involvement affects how research is conducted, studies’ outcomes, and partners’ lives. To learn about the impact of engaging partners in research, view that webinar here.