Table 3.

Summary of Main Themes Identified from Responses to Select Open-Ended Questions

Early Lessons Learned “Based on your interactions with all of these stakeholders up to this point, what initial learnings can you offer to others regarding engaging patients and other stakeholders in research?” (N = 35)
Theme 1: Seek genuine partnership	Respondents emphasized that partnerships with stakeholders must be genuine. For example, one respondent commented, “their participation was enhanced because they quickly realized that their role was not symbolic in nature but was integral to the project’s development in many ways.” Respondents sought to actively involve stakeholders in the decision-making process, which contributed to shared ownership of the project.
Theme 2: Select stakeholders strategically	Respondents recognized the need to strategically select stakeholders representing a variety of different communities or viewpoints and the need to identify the necessary viewpoints to match project specific goals. For example, one respondent described their work as follows: “The three types of stakeholders are quite different and all have been essential to the project. We would not have written a proposal without the administrative stakeholders, the patients and providers are describing the issue of behavioral health within the clinic and identifying their preferences in patient-centered care, and the stakeholder group is deciding how they can feasibly change the way they administer services to meet these needs.”
Theme 3: Continuously involve stakeholders	Respondents acknowledged the need to “start early” and “ask often” as patient and other stakeholders have unique knowledge and improvements to add to the research process along the entire research continuum.
Theme 4: Adapt to the practical needs of stakeholders	Respondents noted the benefits of addressing the practical needs of stakeholders to facilitate their participation (e.g., scheduling meetings outside of traditional working hours, providing transportation).
Theme 5: Define expectations and roles	Respondents identified establishing “parameters and expectations for roles”, giving stakeholders guidance, and allowing time for stakeholders to “get comfortable with their roles” as important tasks.
Theme 6: Use in-person contact to build relationships	To establish strong working relationships, respondents recommended having multiple meetings and underscored the importance of face-to-face contact. While technology and electronic interfaces were noted as facilitators of collaborations across distances, several respondents highlighted the importance of laying the foundation for partnerships through initial in-person meetings.
Contributions of Patients and Other Stakeholders “Up to this point, what are the most significant contribution(s) made by these patients and other stakeholders?” (N = 36)
Theme 1: Changes to project outcomes or goals	Researchers reported that engagement of patients and stakeholders led to a shift in the outcomes of interest to the project. As one respondent described, engaging patients helped the team realize that researchers’ priorities “do not always match priorities of patients.” Another respondent noted “I can say with confidence that our project (the methods and even the project goals) have evolved, in some cases dramatically, based on our collaborations with stakeholders.”
Theme 2: Changes to project methods	Respondents indicated that input through engagement affected their methods in a variety of ways. As one respondent noted, “patient/family collaborators' input was absolutely essential to developing our methods.” For example, patients and stakeholders helped researchers “develop appropriate plans and processes for recruiting patients and interviewing them.” They also helped to improve the ease of data collection, which the respondent indicated may help to speed data collection.
Theme 3: Enhanced access to populations or study settings	Respondents reported that stakeholders facilitated access to clinical professionals and clinical settings in which studies can be conducted.
Theme 4: Modifications to interventions	Stakeholders’ feedback was said to have influenced the development of study interventions, for example, by increasing their ease of use or the manner in which they were implemented.
Theme 5: Refinement of instruments and interview questions	Input into instrument development included pilot testing study instruments, giving “strategic advice” about the length of surveys, and ensuring that the right questions are included for both quantitative and qualitative methods of data collection. As one respondent noted, “our patient collaborators have fundamentally changed the way we ask important questions of patients and families.”
Theme 6: Interpretation and dissemination of results	While most projects were still in the early stages, contributions of patients and stakeholders for interpreting and disseminating results were beginning to emerge. Respondents identified meaningful patient and stakeholder contributions to the interpretation of qualitative findings. One respondent also noted, “they have also changed the way we share study results with kids and families. I mean, they have SERIOUSLY changed things.” Multiple respondents indicated that they expect to engage stakeholders in the interpretation and dissemination of results once findings are available.