Best practices in patient and stakeholder engagement

Abstract text
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 representative Advisory 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.

Conclusion: 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 (figure 1).
Curtis P1, Slaughter-Mason S1, Thielke A1, Gordon C1, Pettinari C1, Ryan K1, Church B1, King V1
1 Center for Evidence-based Policy, Oregon Health & Science University, USA
Presenting author and contact person
Presenting author: 
Valerie King
Contact person Affiliation Country
Samantha Slaughte... (Contact this person) Oregon Health & Science University, Center for Evidence-based Policy USA
Pam Curtis (Contact this person) Center for Evidence-based Policy, Oregon Health&Science University USA
Valerie King (Contact this person) Center for Evidence-based Policy, Oregon Health & Science University USA
Date and Location
Oral session A1O3
Monday 1 October 2012 - 11:40 - 12:00