Table 4.
Proposed general principles of researcher–stakeholder collaboration to conduct successful patient-centered outcomes research in pulmonary, critical care, and sleep medicine
| • Collectively decide on appropriate roles for stakeholder involvement (10, 11) |
| ○ Empower patient research partners and stakeholders to choose their role and level of involvement |
| • Ensure diverse voices are represented |
| ○ Take into account issues such as sex, educational status, SES, race/ethnicity, age, etc., and attempt to elicit input from patients from a variety of backgrounds |
| ○ Consider all potential relevant stakeholders, including family members |
| • Understand perspectives may differ across members of the research team |
| ○ Patient research partners: Provide perspective based on their own experiences, and identify issues meaningful to them and their community |
| ○ Investigators: Provide necessary scientific expertise and research experience; may need to prioritize funding considerations |
| ○ Other stakeholders (clinicians, policy makers, payers): Bring unique viewpoints |
| • Develop a plan to balance the perspectives of each stakeholder group to achieve consensus |
| ○ Encourage a group mentality |
| ○ Identify, discuss, and address potential conflicts of interests |
| ○ Understand that recommendations are nonbinding to promote sharing of ideas |
| • Prepare and train all stakeholders for their various roles |
| ○ Consider systematic training to develop knowledge, methodology, and skills needed to work together effectively (10, 11, 28) |
| ○ Tailor materials to individual roles: e.g., research “guidebook” for patient research partners; training for researchers in collaborative decision making, etc. |
| • Foster collaborative spirit from the outset |
| ○ Ensure that all members’ time and expertise are both valued and appropriately acknowledged, including possible remuneration (10, 11, 29) |
| ○ Demonstrate respect for each other’s needs and viewpoints |
| ○ Start with “big picture” framing to help align team members |
| ○ Encourage open communication for stakeholders with PI and study staff at any time |
| ○ Establish procedures for collaborative discussion and/or decision making |
| • Voting procedure |
| • Modified Robert’s Rules of Order (30) |
| • Quorum required for decisions |
| • Extend reach through innovative and alternative methods of disseminating and implementing results |
| ○ Plain language summaries of research findings to accompany scientific reports |
| ○ Publicize through local television campaigns or social media |
| ○ Summarize findings in community blogs or newsletters |
| • Learn from researchers who have successfully completed PCOR projects |
| ○ Help to identify common challenges and opportunities to improve the quality of future work |
Definition of abbreviations: PCOR = patient-centered outcomes research; PI = principal investigator; SES = socioeconomic status.