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Abstract
Background: Patient involvement in health services and clinical research is emerging as a priority in the US. Congress passed legislation in 2010 establishing an independent Patient Centered Outcomes Research Institute (PCORI). PCORI is developing guidance for involving patients in its research to ensure more relevant and appropriate research products. The Center for Evidence-based Policy at Oregon Health & Science University was contracted by PCORI to conduct interviews with national and international experts in patient and public engagement across diverse fields, as well as facilitated discussions with patients, caregivers, and members of the public to identify best practices.
Objectives: The Expert Interviews Project aimed to identify best practices and innovative methods for identifying, selecting, and involving patients in research processes, as well as methods for eliciting and incorporating their perspectives in the design and implementation of research.
Methods: Working with a representativeAdvisory Panel, we conducted 87 interviews with experts from diverse fields and backgrounds, and facilitated 12 group discussions with 123 patients, caregivers, and members of the public in six regions of the US. Qualitative thematic analysis was conducted.
Results: Effective methods we identified fell into eight categories: (1) planning for patient involvement; (2) patient identification and selection; (3) eliciting patient perspectives; (4) preparing patients; (5) evaluation, feedback, and dissemination; (6) sustainability; (7) communication; and (8) resource considerations. In addition, three key themes crucial for successful patient involvement emerged: respect, communication, and dedicated resources. These findings are being translated into methodolgic standards for patient involvement across PCORI-funded research.
Conclusions: Patient involvement is a process, not a one-time event. Specific methods depend on goals, priorities, and context of each research project and patient experience. Despite this variability, a new model of patient engagement is emerging for the US (Fig. 1).
Objectives: The Expert Interviews Project aimed to identify best practices and innovative methods for identifying, selecting, and involving patients in research processes, as well as methods for eliciting and incorporating their perspectives in the design and implementation of research.
Methods: Working with a representativeAdvisory Panel, we conducted 87 interviews with experts from diverse fields and backgrounds, and facilitated 12 group discussions with 123 patients, caregivers, and members of the public in six regions of the US. Qualitative thematic analysis was conducted.
Results: Effective methods we identified fell into eight categories: (1) planning for patient involvement; (2) patient identification and selection; (3) eliciting patient perspectives; (4) preparing patients; (5) evaluation, feedback, and dissemination; (6) sustainability; (7) communication; and (8) resource considerations. In addition, three key themes crucial for successful patient involvement emerged: respect, communication, and dedicated resources. These findings are being translated into methodolgic standards for patient involvement across PCORI-funded research.
Conclusions: Patient involvement is a process, not a one-time event. Specific methods depend on goals, priorities, and context of each research project and patient experience. Despite this variability, a new model of patient engagement is emerging for the US (Fig. 1).
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