Benefits of engaging with our community scientists

The 2013 Institute of Medicine report emphasized the importance of including patients, caregivers, and other stakeholders in the research process to advance translational science. According to the reports, patients invited to become involved in the research process have much to offer the research enterprise, including:

• Identifying local community health needs
• Describing best practices
• Providing input on research questions
• Identifying outcomes of interest
• Advising on culturally appropriate protocols and recruitment tactics
• Informing researchers about relevant variables

Several funding agencies explicitly support this shift toward the inclusion of end-user perspectives in the research process. The Patient-Centered Outcomes Research Institute (PCORI) and the Agency for Healthcare Research and Quality (AHRQ) are especially interested in engaging diverse stakeholders in the research process.

PCORI defines “engagement in research” as “the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process – from topic selection through design and conduct of research to dissemination of results.” PCORI also notes that while an engagement plan is required as part of its application process, it does not require specific activities and instead “encourage[s] applicants to bring their most creative engagement ideas forward.” AHRQ’s Guide to Patient and Family Engagement states that “conceptually, both patients and providers support patient and family involvement and participation in their own care and recognize that it can lead to better patient experiences and outcomes.”