Keywords

Introduction

Patient-centered outcomes research (PCOR) addresses issues and measures outcomes that are meaningful to patients and other stakeholders. PCOR emphasizes involving patients and other interested stakeholder groups such as clinicians, advocates and caregivers in the research process [1,2,3,4]. Some funding agencies, such as the Patient-Centered Outcomes Research Institute (PCORI), require the “active incorporation of perspectives beyond those of the researchers” throughout the entire project [1]. Understanding factors that contribute to successful collaborations is a critical component to better serve our patient populations and forge stronger partnerships in PCOR. The involvement of engaged and enthusiastic team members with diverse perspectives is one of the factors important for PCOR.

The benefits of engagement are demonstrated through the effective management of partnerships concerned with health and social welfare [4, 5]. True engagement yields better work performance among team members. Improved work performance among teams is supported by creating an environment in which team members can fulfill and exceed expected roles and apply creativity to problem-solving to achieve or exceed the desired outcomes [4]. Similar contexts among health care teams can increase patient-centered care [6].

For teams conducting PCOR, one approach that may work to promote involvement among stakeholders with diverse perspectives and experiences is research democracy—a process in which individuals involved in research (e.g., team members, participants, advisors) have a vote and a voice in the decisions that are made and the procedures that are used to conduct the research. Elements of research democracy include opportunities for sharing opinions, casting votes, discussing outcomes, and identifying areas for improvement. We expand upon ideas presented in the limited literature on team engagement in PCOR [7,8,9] and provide examples of effective communication to keep each member updated and informed [9,10,11]. Research democracy can also provide a process for fostering creativity, innovation, and synergy among team members [9, 12, 13].

The purpose of this chapter is to describe research democracy in a PCORI-sponsored project, the Nueva Vida Intervention, and illustrate how such research democracy may promote PCOR. The literature on team engagement in research and public health interventions is limited [7,8,9]. To address these gaps, we present research democracy applications (Table 16.1), team member satisfaction (Table 16.2), barriers (Table 16.3), and benefits (Table 16.4) to conducting research in a PCOR context.

Table 16.1 PCOR elements and research democracy approaches in the Nueva Vida Intervention project
Full size table
Table 16.2 Team member satisfaction and experiences survey results
Full size table
Table 16.3 Barriers identified during work on the Nueva Vida Intervention study
Full size table
Table 16.4 Benefits identified during work on the Nueva Vida Intervention study
Full size table

Methods

The Nueva Vida Intervention is a dyadic intervention that aimed to improve quality of life outcomes among Latina breast cancer survivors and their caregivers (PCORI AD12-11-5365) [14]. The Nueva Vida Intervention was evaluated in a randomized controlled trial, and the study team was composed of four community-based organizations (CBOs), scientific investigators from the Lombardi Comprehensive Cancer Center at Georgetown University, clinical and research consultants, an advisory board that included Latina cancer survivors and caregivers, and a data safety and monitoring board [14]. The intervention consisted of eight group-based sessions in which survivors and caregivers learned coping and communication skills in separate rooms and then joined together for discussion and a meal [14]. Throughout the process of study design, intervention refinement, protocol implementation, and follow-up, we collected data on team engagement through informal observations, direct discussions during team meetings, and survey assessments.

Results

Table 16.1 illustrates how we applied elements of PCOR using research democracy approaches during the randomized controlled trial to evaluate the Nueva Vida Intervention. We identified these elements based on evidence from studies of employee engagement, team engagement, and community-based participatory research [13, 14].

During the study period at one of the annual in-person team meetings, we administered a survey to assess team member satisfaction and experiences (see Table 16.2 for a summary of survey results). Team member feedback on this survey helped set the agenda and procedures for upcoming team calls. We specifically asked for barriers and benefits to individual team member’s success and involvement with the study. By eliciting input during open communication on team calls and also through a survey, we obtained feedback about team procedures so that adjustments could be made, as needed. We presented results to team members to promote transparency and open communication. Team members identified barriers (Table 16.3) and benefits (Table 16.4) during the Nueva Vida Intervention Study.

Sites also reported enhanced team engagement within their own organizations. One site principal investigator reported that participation in the project contributed to restructured roles, unified people as a team pursuing a common goal, and fostered creativity and collaboration. The methods used to promote team engagement thus appeared to be advantageous not only for the larger research team but also for the individual community-based organizations. A critical component to whether partners on a research team can thrive involves recognition of their time and expertise through appropriate compensation for time and inclusion in the dissemination of results.

Discussion

Research democracy, a process by which all members of a research team (patients, CBOs, scientific investigators, and other stakeholders) are engaged, valued, respected, and heard through both direct voting and open communication, resulted in a successful PCOR project, the Nueva Vida Intervention study. The management strategies employed kept the study running efficiently and effectively and established mutual trust. Setting clear expectations provided opportunities to foster such trust, and listening to team member concerns promoted transparency and sharing of information in a safe environment. Transparency and effective communication alerts a site to events occurring at other sites which may disrupt study flow such as staff turnover, staff illness, site moves, or other obligations. Team cohesion, developed using the elements of team engagement, generated enthusiasm for the research project among the team members. The diversity of the team was an asset, contributing to the goals of team members individually and the research project as a whole. For example, flexibility during implementation of the study and dissemination of information to the community was particularly important, because the CBOs were more familiar with the community and culture than the researchers. Elements of team engagement that value each person may be more likely to promote community members’ participation in future research. These preliminary results suggest that active application of research democracy elements may promote team engagement and satisfaction as well as awareness of project barriers and benefits, which may, in turn, strengthen and promote PCOR. Future research can systematically explore approaches for how to best assess team engagement to strengthen and promote PCOR.