Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute.

Charged with ensuring that research produces useful evidence to inform health decisions, the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage patients and other health care stakeholders, such as clinicians and payers, in the research process. Many PCORI studies result in articles published in peer-reviewed journals that detail research findings and engagement's role in research. To inform practices for engaging patients and others as research partners, we analyzed 126 articles that described engagement approaches and contributions to research. PCORI projects engaged patients and others as consultants and collaborators in determining the study design, selecting study outcomes, tailoring interventions to meet patients' needs and preferences, and enrolling participants. Many articles reported that engagement provided valuable contributions to research feasibility, acceptability, rigor, and relevance, while a few noted trade-offs of engagement. The findings suggest that engagement can support more relevant research through better alignment with patients' and clinicians' real-world needs and concerns.

Health researcher views on comparative effectiveness research and research engagement.

AIM: To understand researcher capability for and interest in patient-centered comparative effectiveness research (PC-CER), particularly related to engaging with patients/caregivers. MATERIALS & METHODS: Web-based survey of 508 health researchers recruited via professional health research organizations. RESULTS: Most respondents (94%) were familiar with CER and many (69%) reported having previously conducting some form of CER. Most respondents were familiar with (81%) and interested in (87%) partnering with patients and/or caregivers in research. Resources to assist in training, coordination of partners, guidance in apply for funding and improved infrastructure were commonly cited factors that would help researchers conduct PC-CER. CONCLUSION: There is a significant opportunity for researchers to engage patients and caregivers as partners in CER. Researchers recognize the need for additional training and expertise to leverage those opportunities.

Patient, caregiver and clinician use of comparative effectiveness research findings in care decisions: results from a national study.

AIM: To assess awareness, use and attitudes concerning comparative effectiveness research (CER) findings. MATERIALS & METHODS: Online surveys of patients and caregivers managing rare (n = 560 patients, n = 609 caregivers) or chronic conditions (n = 762 patients, n = 776 caregivers), and practicing clinicians (n = 638). RESULTS: Less than half of patients and caregivers reported exposure to any type of CER findings in the past 12 months. Of those, over half identify healthcare professionals as the information source, yet only 10% of clinicians indicated they were 'very familiar' with CER. Clinicians were concerned about the time required to find relevant evidence and the appropriateness of comparisons in available health research. CONCLUSION: Clinicians, patients and caregivers indicate unmet need for incorporating CER research findings into clinical decision-making.

Patient, caregiver and clinician views on engagement in comparative effectiveness research.

AIM: Describe patient, caregiver and clinician views toward engagement as partners in health research. MATERIALS & METHODS: Online surveys of patients and caregivers managing rare (n = 560 patients, n = 609 caregivers) or chronic conditions (n = 762 patients, n = 776 caregivers) and practicing clinicians (n = 638). RESULTS: Over half of respondents were unfamiliar with the concept of partnering with researchers but most expressed interest in working in a research partnership. Potential facilitators endorsed were ensuring research is meaningful, applying results in an understandable way, and sharing results. Lack of time is a potential barrier. Clinicians were most interested in helping researchers decide on intervention comparisons and identifying implications for clinical practice. CONCLUSION: Patients, caregivers and clinicians are interested in research roles that emphasize usefulness and understandability of research.